Natalie Schneider

in our hearts and prayers

 

natalie

in our hearts and prayers

 

so, how is she?

22 July, 2010

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Dear Everyone:

I know it has been forever since I wrote an update. Days became weeks, weeks became months and so on. We have continually watched Natalie grow. She is a miracle not just from God but from long involved training.

We should start with where she is now. It could probably be summed up by just telling about yesterday. We had the privilege of conducting our first speech together. We spoke to the Blue Springs Police Department's boot camp. This is where all high risk kids get a chance to turn their life around. They learn to respect authority in order to quit being so self destructive. Nat and I told about her accident. It was a great way to give back. We spoke for about 30 minutes and could have gone for more except we were losing the audience. Nat and I loaded up our pockets with tissue in case we lost it in front of the kids. I was so amazed at how emotional Natalie was. You know she was supposed to have lost all emotions in this accident.

Natalie has some difficulty that will be with her the rest of her life. We are learning to be blind. She frets every time she has to study her braille. We go every Tuesday for practice with the people with RSB. Natalie's hypothalmas does not tell her that she is full so she eats and has gained weight. We ecxercise as often as possible. We swim at least 2 times a week and we walk everyday. Nat also helps with chores. It is hard to entertain Nat because everything requires me to help. So she sits on the couch more that she should.

Nat and I along with Tom continue to travel. Our latest trip was to Austin, TX. My hope is to relocate there someday. I just love the city. We were able to reconnect with her old friend from boarding school and I reconnected with some of my friends. I think the city has not suffered as much as the rest of the country, They still maintain their entrepunural spirit that motivates me and everyone around you to keep going. So if we can make it happen...

The hardest thing lately has been watching her brother Max stay in California and her little sister, Laura move away to California, too. We miss them a ton but they are pursuing their dreams and we hope to get out there to see them in the fall. Derek spent the summer in Pittsburgh interning at the Pitt Airport. Derek has been at Embry Riddle studying airport management. He wants to run airports. HE still has one more semester and then we are through with college.

Nat still has her dog Maximous. He has calmed down since he has been on Puppy Probation. She still lets him out at night. He still gets lose every so often but now we can get him to to come home. I just can't bare to get rid of him. He helped her come back to us by visiting her in the hospital and sleeping with her every night. And he has captured my heart as well.

Tom still is looking for more meaningful work. He has worked for the Royals, the Chiefs and for Bonterra Catering. He had a contract job at the IIRS for 2 years now for the winter. This has taught him he wants to go back to hotels. Sixty six percent of the Director of Food and Beverage positions have been eliminated from hotels. So it has been tough. The silver lining has been the time he has had with Natalie. They are buddies. What a difference from the first time she was 15.

Natalie's hair is long. Her eyes seem more normal and seem to be real to people. The hardest thing to hear yesterday was that she missed her friends the most. Not her eyesight, not her waist line, not her cognitive thoughts but her friends. People shy away from her because she is different. It is hard to encourage friends that have the same difficulties because it becomes impossible to take care of them both. One person asked her what she wants from her old friends. She says she just wants them to ask her how she is. To treat her normal and still call her to hang out.

So We plug ahead. It has been 2 and a half years and we plug on. Natalie has been given back to us and continues to come out of the fog. We are so fortunate and thank God everyday for our blessings. If you get time, give her a call at 816.228.9345. She would love to hear your voice.

Always the mom,
Nancy

 

12 February, 2010

First of all we want to wish everyone a great new year.  As I see it, life just gets better.  Natalie is living proof of that.  She constantly improves.  For example:  She did not know the words to Jingle Bells or Rudolph before Christmas.  It’s not like we sat around and sang them regularly but just last week she sang all the words.  It’s like lights slowly turn on.

We had a wonderful snowed in Christmas.  Everyone got to come home.  I know this is borrowed time so I just enjoy them.  After Christmas we all spent some time in Playa Del Carmen.  If any of you ever want to get away and forget all of your troubles…  Nat did great. We went for 3 plus weeks.  Natalie finally retained the story while listening to a book on CD.  I guess it was easy because it was the 2nd book in the Twilight Series.  We did not have TV because since rentals are down the selections become limited on TV so she had to read.  We were fortunate to have family come to break it up.  I think Nat got the most beautiful tan.  She was able to get in the ocean and was happy just being warm.

Nat got her tests results back and they were just about the same.  I refuse to believe that she has leveled.  She keeps coming back to us everyday. 

Nat and I still swim as much as possible.  She is up to 45 laps.  I am getting stronger just hanging with her.

Probably one of the hardest things has been this situation with her dog Maximous.  He went to puppy prison for getting out and fighting with a dog.  Tom and Nat were on their way to do their nightly walk and out he escaped.  When we found him he had been in a dog fight.  Someone had put their hand in the middle and got bitten.  So off he went to be impounded at the vet.  We did not have him for Christmas.  We did not have him for all of the month of January.  This was a blessing because we went to Mexico anyway.  His court date was tonight.  He was going to be deemed a dangerous dog or not.  During this time we came to the realization that he probably should find a new home since Nat will need a seeing-eye dog someday.  So we went to court to get him off so someone would want him.  His sentence was 1 year probation, has to be restrained at all times (the ordinance here in BS) and Natalie had to pay a hefty fine.  So we get him back tomorrow.  He has been at the vet for 8 weeks.  Tonight I wrote the Dog Whisperer about Nat’s story.  We will have to get training… Wish us good luck. 

It was interesting to see Nat’s reaction to the whole thing.  I don’t know whether she could not show her emotions or she had no emotions about this.  I kept asking her and she said she was okay with whatever.  She said she would miss Maimous but she wanted what was best for him.  So who knows!

As we hope for a thaw in this great igloo called Kansas City we are so happy to see people who care.  We go places and see people we know.  I know this may sound strange but when you have moved around as much as we have home is hard to find.  Thanks for letting us move in and stay.

Love, Nancy
Aka forever positive!!!!!!

 

18 Dec, 2009

Dear Friends:

It is my turn to let you know what is happening.  Nat Nat and I have become co-joined.  It is just part of the situation so I have decided to make it a wonderful career.  I am beginning to accept our lives.  I know by the time you get to be in your mid fifties all of us have something that has changed our lives.

Anyway Nat and I spend a lot of time in the car.  Since she can’t drive I tote her everywhere.  Needless to say I have learned words to songs I used to avoid on the radio.  We sing along together.  I asked Nat if she thought she had recovered.  She said yes but there is still that lack of enthusiasm in her voice.  We are working on manners such as face the person who is talking or covering her mouth when she coughs.  We don’t realize sometimes that she doesn’t see the people that are around her.  She believes she is alone except for noise and she is still tweaking her other senses.  So we continue.

Yesterday was a hard 24 hours.  Sunday night after dinner Tom and Nat were going on their nightly walk to the stop sign.  Tom had just driven 18 hours with Derek from Daytona and had worked the Chiefs game.  He was exhausted but agreed anyway to take the walk.  Nat was to go ahead with her cane and Tom and Maximous would follow.  This has been a standard practice for months.  As Nat opened the door out ran Maximous.  Tom and Nat ran after him as best they could.  They couldn’t stop him.  Just as soon as they got close he would look at them and away he would run.  After circling the little lake behind my house 3 times Nat and Tom came in saying he was missing.  Derek and I ran to the car with a flashlight to find him.  We got real quiet and listened for barking.  We heard dogs and tore off to find the dog.  We found him in some man’s hands.  He had been in a fight and someone had gotten bitten.  The police came. The ambulance came.  It was a mess!  Maximous had some small wounds but the lady who jumped between the dogs had gotten bitten.

Yesterday Maximous was taken to puppy prison.  The animal control issued Natalie 2 tickets one for harboring a dangerous animal and one for a dog off his leash.  We had to send him to our vet to have him quarantined for 10 days and then he can’t return to the city limits of Blue Springs until his court date which is February 5.  We have to have him boarded since we have no one outside of Blue Springs we can send him to.  So what a mess and an unexpected costs in a time when things are tough! 

Natalie was 26 yesterday.  The fears that lie ahead makes me worry.  So we continue to take one day at a time.  We also celebrated her 2nd birthday on the 11th.  It has been 2 years since the accident.  The fears of setbacks and seizures greatly disappear now that it has been 2 years.  We all thought she would not come back this far.  My prayers have been answered.  The only part is the lack of enthusiasm in her speech and attitude.  But I have her.  At a time when THE child was sacrificed for our sins, I realize just what a sacrifice it must have been.  So I look for peace in my household and life to continue to be an adventure.  Have a safe and wonderful holiday!

Love, Nancy

 

25 November, 2009

I told Nancy that I would write the next update at least two months ago, and I'm just getting to it. I have been so taken with a major project I started and it seemed every step I took forward I took two backward. Anyway, with the great weather we have been having in Kansas City has allowed me to finally finish getting the deck and the back of the house completely painted. So with that behind me Nancy has been gently reminding me that I needed get an update written.

SO HOW IS NATALIE DOING???????????

Nancy and Laura did such a great recap of the summer and the huge progress that Natalie has made and continues to make. One thing that I have learned through this recovery is that the brain works in many different ways. I was so upset with the doctors after the accident when they keep telling us that we don’t know if she will recover, or if she will be disabled for the rest of her life. Now, I have finally figured it out.  The doctor’s didn’t really know. The brain is a complex part of the body that can work and heal in so many different ways that even professionals that study it day after day can not predict how and when it will heal. 

I spend a lot of time with Nat and that time is spent in the car or truck driving Nat to work or doing daily errands. Therefore, Natalie started to ask questions out of curiosity such as:  Dad do you have your hands on the steering wheel?  Are they where at 10 and 2?  How fast are you driving?  Because Natalie could see before she remembers specific landmarks around Kansas City, but this took awhile for her to recall where we were at.. Now she knows two different routes that we take to get her to work twice a week. She even knows the names of the streets and highways that we take. She evens knows the feeling of a certain streets by the way the car rides, and that lets her know where she is at. For example she named one of the streets bumpy ADP or better known as {Adams Dairy Parkway}. But she had to change the name after the road was repaved and is no longer bumpy.  Now Natalie just refers to it as just ADP. Some of the landmarks that she knows takes your breath away. The one that really gets to me is when she will say; Are we going by where I lost my eyeballs yet?  We past the sight of her accident quit frequently and she knows exactly where it happened. Surprisingly, she remembers all of the major landmarks to and from our route to Alphapoint. The progress that she has made from the time she started to work till now has been a complete turnaround.

Besides riding in the car Nat and I will take a walk after dinner almost nightly. If the weather is terrible then she will do the stationary bike for 30 minutes instead of going outside. Of course I will agree for her to do that so we both don’t have to go out in the cold.  

Recently Doug, Nat's mobility coach came to the house and reviewed her use of her cane. He believes Nat has a great grip and uses the cane correctly but she needs to use it more. So he took Nat on a walk and told her how to get up to the end of the street by herself. She counting the driveways to the end of the street then turns around a repeats the process. This route is the same one that Nat and I do after dinner and now instead of Nat relining on my arm to show her the way she doing by herself for the most part.  She is less reliant on me every trip.

Recently, we have been expanding the length of our walk so she can have some practice for the 5k walk and run that the family is going to participate in on the morning of Thanksgiving, what a way to kick off a holiday. All her brothers and sister will be home to get her through the 3.1 mile route. Then we all will set down for Thanksgiving dinner, we all know Natalie loves her food.  

Its great to see her progress all the time. I believe we have talked about the different jobs she does around the house in the past. For example, fold towels, empty the dish washer, feed her dog, let him in and out of the house, put her clean clothes away and take a bath by herself. Now, she decided one morning that he was going to make herself breakfast when Nancy and I where out of the house. Nat got hash browns out of the freezer and put them in pan, and then on the stove to cook them. She heated a frying pan and fried herself a couple of eggs. By the end she had herself a great breakfast as she would say, it was delicious.. When I got home I spoke to Nat to let her know that it is not safe to use the stove when we are not with her because she could catch the house on fire or injure herself.  But we would start practicing with her on cooking some items so she could get the hang of it.

Nat recently went to baby shower with Nancy and a lot of her friends of the past where there. They all were so surprised of her progress and really noticed a lot of Nat's old traits coming out of her again which is all part of the healing process.

The last thing I want to share was the most exciting thing yet. Yesterday, Laura and I had gone fishing in the pond behind our house.  We were waiting for Nat to return home with her friend Megan. Laura and I where catching some fish, and having a Dad's moment with his daughter. When Natalie returned home she immediately came down to the shore line and I got her set up with a pole to join in and fish with us.  Within a minute her bobber was moving quickly and she reeled in her first fish, it was a small one. We got her pole back in the water Laura and I where commenting on how lucking Nat was when it came to fishing. Then her bobber took off and disappeared in the water and I yelled at Nat to jerk the line, she start reeling the pole in. Natalie could hardly reel it because she had a real fighting fish on her line. The look on her face was one that I will always remember. She had a look as if someone had scared her and a smile from ear to ear. She must have fought with the fish for several minutes and when she pulled the fish in it was the biggest fish we ever caught from the pond in our backyard. The fish was at least a 3lb large mouth bass or bigger. I was smiling for her and what a great moment with my two daughters fishing.

I want to leave you with one more thing that I feel sums up her whole progress. We will be driving along and she will say to me" I am blind Dad and I hate it" and I will say yes I know  and then she will say to me "but I going to deal with it.”

To all have a Happy Turkey day.
Tom--

 

1 September, 2009

Dear Friends of the Fam,
 
I just wanted to take sometime before I go back to school to let you all know “what’s been going on,”  with the Schneider family.  This is Laura, Natalie's sister. I have recently spent the summer in London through the University of Missouri's Journalism school studying advertising. Making the desision to study abroad was very hard for me.  I didn't know if I could leave my family and Natalie for 3 months. Because I go to Mizzou, I am the closest Schneider kid to home. Therefore, I have experienced every step of Natalies recovery. When making my desisison to study abroad I was very hesitant about going. I know how much of a help I could have been at home, and almost felt guilty for going. But my mother would not take no for an answer. She was the number one supporter of my decision to study abroad. My mom has  made constantly effort for everyone of us to live our lives to the fullest.

Since, leaving for London Max has relocated to Califonia for his job. I think his move was that hardest thing on my family this summer. Max is such a rock and much of the backbone to this family. I continue to be impressed with his relationship with every single one of us, especially Natalie. Max always seems to have the best interest of his family at heart, it was a very hard desssion for him to move. He recently spent time with the family at Callaway, and has planned a Schneider family get together for Labor Day. Even though he made the desssion to move he is always making an active effort to stay in touch. Max's talks to everyone in the family at least once's a day to make sure he knows everything that is going on. As my mom would say " What technology can do."



This summer has been a summer of technology.  Today, Derek and I gave my Dad a Google 101 course. I think he knows more about the computter these days then the majority of his peers. Since being in London this summer, the only way to communicated back home was through "Skype." Skype is a online video phone. It allows for normal everyday people to video chat each other from anywhere in the world. This worked perfect for our family, because of Skype I was able to not miss a second of Natalie's summer.

The first thing I heard Natalie was doing this summer was demanding to swim at the neighborhood pool on a regular basis. Her demands have continued to increase. If you think about it Natalie has always been a demanding girl and she hasn't change a lick. I would talk to her over video chat. If someone was not taking her where she wanted to go, walking her up to the top of the street, or give her pills when she needs them she would let me know and everyone else around her. She is keeping everyone on their toes.

I also have observed that Natalie has devloped a very strategic routine. Natalie gets up every morning with a smile on her faces demanding breakfast from Dad. Today I woke her up and the first thing she said to me was "Hey sisie Laura, what's dad making for breakfast?" One thing that Natalie and my Dad contiune to share is their love for food. With food must come exercise. Therefore, my parents have made some form of exercise in her routine. My mom takes her swimming, on walks, and makes sure she helps with yard work. In Natalie's routine she has developed herself as a working member of the family.  Natalie folds the towels, sets the table, puts away the silverware, and makes the grossry list. She also lets Maximus in and out.  Tom rigged a hook for her to keep a chain on so she can be responsible for her dog.  All of these things in Natalie's routine have helped regains normalizes one day at a time.

Even though Natalie's lives by her daily routine she has not missed a moment of summer activities. Natalie rode the mechanical bull at the employee picnic for Alpha Point where she works. My mom was shocked when Natalie was the first one to volunteer. The only hard part was getting her up on the bull.  After shoving and trying numerous times she was on for only a minute, the panic in her face was priceless.  She eventualy fell off and got up grinning her crooked smile. My mom said you could tell she was proud of herself. I was very sad to miss this moment.

At the end of the summer I got very sad because of missing all of the family events in the US. One of the most regrettable things was missing Amber's wedding on a mountain top in Boone, NC.  We had been at our annual family reunion at Callaway Gardens in southern Georgia.  All of the family left Callaway and trekked to the mountains for the wedding. Spending time with our extended family always helps with the day to day demands of Natalie.  My mom has her first night without Natalie and my dad since she came home from the hospital the night before the wedding.  I know she is very thankful to have some time alone. I heard Natalie had a great time at the wedding was was even dancing with the cousins. When I asked her about the wedding she told me that She "cut a rug on the dance floor."



Nat has had a very full summer. She has gone to movies with descriptive services, did a walk for the KC Rehab Institute, and gone to some of her own friends weddings.  She has gone to concerts in the park with the parents and ridden on the boat at the lake.  Her most favorite is driving the boat since there are not lines you have to stay within.  The Fam giggled about getting stopped by the lake police and just telling him that she's just blind. 

The most amazing thing is that Natalie is not surposed to have feelings and emotions. Tonight, at our last family dinner before us twins go back to school. I was talking to Natalie about when I first saw her after the accident. I was explaining what everyone was doing when I got there. As soon as a started to tell the story Natalie started to cry, by the end we all were crying. Natalie's intelligences lies in her heart. She is like a sponge listening to everyone around her and chiming in at the most unexpected moment. She continues to amaze me.

After, spending 3 months away from her, I see that she has made progress and will countitue to strive as a person. Because of the wonderful people who have shared part of their life's with her. It's easy to be a happy person where ever you are when you have people around you that love you. I have never got to say ,but thank you to all of you that have contributed to my sisters recovery. I don't think any of us would be the same people with out her.

Love,
Laura

 

Dear Friends:

We have had the most amazing summer.  Natalie continues to come back to us.  I am amazed at her personal strength.  I just got home from our first trip together just the 2 of us to visit family.  We went to Orlando to see sister, Liz and then to Daytona to help Derek get ready for school.  We had a gas!!!!

Liz was such a wonderful host.  We got to sit up nights and mornings visiting in her beautiful beach house over looking the inter coastal waterway.  We spent a day at the beach boogie boarding.  I caught at least 15 great waves and Natalie caught a few.  She is fearless when I am with her.  She too was loving being in the ocean and was not afraid to ride the waves.  Natalie also road a bicycle built for 2 with Derek.  She loved it. We relaxed in tidal pools along the beach and walked at sunset.  Liz’s kids just love me and I just love them so we had some great moments.  Natalie came home feeling more confident than ever.  She is communicating and asking more questions every day. 

Derek got settled in to his apartment in Daytona.  He started Embry-Riddle on Monday.  He has his stuff together.  He handled everything.  He did let Liz and I decide where stuff goes in his apartment.  Tom and Derek had driven his belongings over to Daytona last spring and stored them for this fall. Derek lives on the 6th floor in a small one bedroom apartment.  On the left is a same view of the ocean and on the other side is the Inter Coastal Waterway.  Derek and I tried to watch the space shuttle launch but they had to keep delaying it due to weather.  We also enjoyed seeing the waves that were affected by Hurricane Bill.  Natalie loved feeling the sand disappear from underneath her feet as the water went back in the ocean. Derek is going to be so happy there.  He got up yesterday and rode his bike on the beach before he went to class.  He just lives 6 blocks from the beach.  What a way to go to college?

Nat and I were sorry to say goodbye and come back home.  She did great on the plane.  She only got nauseous once.  That’s when we arrived on the tram to get our luggage.  They say that riding on a plane simulates a hyper baric chamber which helps the body heal quicker.  Anyway she’s been a chatter box since she came home. 

Once again she and the human body along with Gods graces and love from others continues to help my baby recover.  Thanks for caring. 

Love, Nancy

 

 

May 14, 2009

Dear friends:

Tonight may have been the best night of my life.  All of my children were here for dinner.  We are all getting ready to go our separate ways so this was extra special.  Nat was walking on cloud nine.  She is such a trip when they are all around.  We all walked her nightly walk up to the top of the street after dinner.  Tom had knocked himself out to prepare a special dinner.  Let me digress…

… Tom or should we refer to him a Supertom has been really pushing himself lately.  He works at the IRS regional building from 5pm-2:30am Monday through Thursday.  He worked this schedule last Thursday night.  He then woke at 4am on Friday morning to catch a 7am flight to Baton Rouge to move Derek’s belongings to Daytona where he is going to school next year.  Derek had been studying for finals and had not packed as much as Tom had hoped.  They pulled out of BR at 9pm and made it to Slidell just a few miles away.  They woke at 7am the next morning to trek across the south.  They arrived in Daytona later than expected so the truck could not be returned that night.  They settled in at Liz’s house at the beach.  Derek went with his cousin William to party in Daytona.  This was great for Derek to see for next year.  Mother’s Day Sunday they unpacked and headed back to KC, 1800 miles away.  They wanted to drive straight through because Tom had to work Monday night at 5pm-2:30am.  So at about 2:30am I called Tom since I couldn’t sleep.  He had just changed with Derek after a 5 hour nap.  About 30 minutes after I hung up he called again.  Damned if he had not hit a deer.  It seems Tom had seen some deer on the side of the road out in the middle of nowhere on a deserted interstate.  As he turned to continue driving there was a deer in the middle of the road.  Tom and Derek pull to the side of the road and get out to see the damage.  As Tom opened the door there was the deer staring straight at him, dead.  Tom then pulled the car completely off the road and a camper comes by and bam they hit the deer too.  The deer went flying over the highway to the other lane.  Then a truck comes by and bam the deer comes back toward Tom and lands next to their wrecked can and blood gets on them.  Then the deer gets hit again and bounces over to the other lane.  By this time they have located the police and they are on their way.  They gave a description of where they were and damned if the cop whizzed right passed them.  And guess what they hit.  Yes the deer.  So back it flew towards Tom and Derek.  I can just imagine this deer flying back and forth across the highway while Tom and Derek were on this deserted highway at 3am.  I got my stuff together and headed out to get them 40 miles east of St Louis.  What a Mother’s Day!

Nat is slowly coming off the drugs that she has been on.  Today she went to the doctor and we are lowering her opiates to help make her more in tune with what’s going on and hopefully decrease the side effects. 

I went to a seminar about adaptive equipment for Nat and was so thrilled to see people who actually were there on her behalf.  She has made such an impression on her caregivers. 

So off went the others to meet friends on the Plaza.  Nat is in bed.  They have friends to stay with so they don’t have to worry about drinking and coming home.  I am so proud of how loyal they are to each other.  I think they enjoy each other’s company more than most of their friends.  They also love us, Tom and Nancy.  Life couldn’t be better.

Love, Nancy aka a kissed pig

 

April 30, 2009

Dear Everyone:

I have so much to do but I would much rather visit with my loved ones than get ready for Bunko on Tuesday, participate in the neighborhood garage sale beginning tomorrow and plant the neighborhood entrances and my yard.  I know these are different than most people’s chores because these are my escapes.  When you have an earth shattering experience you look for good things along the way.  Natalie is on the couch chillaxing while I pretend to get stuff done. 

Yesterday Natalie was bound and determined to walk her own dog outside.  So finally I let her.  She was not being dragged around like she was water skiing.  She has such strength.  She grinned and yanked the dog when he misbehaved.  She is fearless.  I have started leaving her home by herself with a walk around phone close.  I thought she would just sit there.   But not Nat!  She takes baths and made herself a turkey sandwich the last time she was by herself.  I play tennis several days a week and she gets bored sitting at the club waiting for me.  So now she stays home alone if Tom is working.  The other day at tennis I was serving and I stopped to answer the phone so she could tell me to get her Taco Bell on the way home.

Tom is Mr. Worker.  He is the kind of person who can’t not work.  We continue to send resumes hoping for something to give.  His industry is in the toilet and no one is hiring.  So we are the perfect representative of today’s middle aged unemployed worker.  In the meantime, he continues to work pick up jobs.  Today he works at the Royals.  After that he works at the IRS building until 2am.  Then he doesn’t work again until 2pm tomorrow until midnight tomorrow night.  So we don’t see much of him. 

How about this swine flu?  I guess I get the award for having the stupidest investment, our house in Mexico.  First it was the drug lords and now it is the swine flu.  Do I feel lucky?  The good thing is we can almost close the doors and shut it down.  It is about the same as a car payment to keep it going.  I hear that the people in Playa are wearing surgical masks to go to Walmart and the schools are closed. 

Every time I attend a function for TBI patients I know how fortunate we are to have Natalie.  She is really doing well.  Our friends have had such worst luck.  Max’s childhood friend and a great friend of mine’s child, Skyler Tolson died of complications from cancer treatment.  My twin’s good friend Anthony Palumbo died just 3 weeks ago.  Both come from strong wonderful families.  We understand that there by the grace of God is our Natalie. 

I love this time of year.  Things are waking up and showing their best colors.  Natalie and I have names for the different directions of the winds.  We believe the southern winds are winds of change.  So we look forward to our future with great anticipation.  Hope all is well with all of you!

Love, Nancy aka Mother Earth

 

April 13, 2009

Dear friends:

I am sitting in the dark while Nat is asleep and Tom is working one of his 3 part time jobs.  It gets lonely being by myself when I have had so many kids around for most of the years we have lived here.  The mornings are the hardest.  That’s when you can’t escape from reality.  Another day with problems that will never go away.

Natalie is progressing. She seems so happy when her siblings are around.  She is such a people person.  It must have been rough for her when she knew no one in Houston/Conroe.  Max is in Dallas this for a few weeks training for his new job.  Derek was home last week on Springbreak .  Laura was home for Easter.  And Grandad and Ann were here last week.  So we’ve had people around.  Now it is so quiet. 

Next week we start mobility training for the blind.  Natalie had a way too short cane so we got a longer one last week.  I am thinking about buying her a Kindle since they have a talking feature.  I found a Descriptive Video source today.  These give the stage directions to help tell the story for the blind.  I also found an underwater radio hoping it will help Natalie swim in a straight line.  I also found an adaptive swim instructor to help Nat with the tricks of being blind and in the water.  So we are busy.

Natalie has expanded her chores to include gardening.  She helps keep the rubbish bags open and breaks up the sticks.  She rakes together piles and picks them up.  The other day I caught her trying to boil an egg for a spinach salad.  She is fearless.  She navigates this house and still wakes up at odd hours wanting to shower or eat breakfast.

I have such self doubt about everything these days.  Spring is coming.  Natalie is my bright piece of sunshine.  For this I am grateful to God.

Love to all, Nancy

 

March 16, 2009

Dear Friends:

Buenos Dias:

We had such a great time in Mexico.  I would encourage every one to visit Playa.  It is such a magical place that takes you away.  Each your heart out Calgon

Natalie was great in Mexico.  She had no problem flying.  We took advantage of the electric car service through the airport.  We got to the house just as it was getting dark.  The next day we had to get groceries.  Tom loves the grocery store so he loves to see their stores.  We had a mission to get the place in order.  This was a great challenge for Tom and kept his mind of the reality of home.  Nat went with us to the stores with a lot of trepidation.  She not only hears a crowd but a crowd that did not speak her language.  The crowds at the store were larger than normal since it was Saturday. 

On Sunday we went to get Lauren.  Natalie and Lauren went to San Marcos together.  Lauren has been a loyal friend.  Nat moved to Houston to be close to Lauren.  Anyway she was great.  She helped us anticipate Nat’s needs and loved being around Nat.  She helped me buy a couch and 2 very expensive pillows.  She was with us until Friday. 

Natalie was a little scared when the ground underneath her would not support her steps.  Walking through the lose sand was weird.  By the end of the week she was used to the sensation.  Nat gets the award for the prettiest tan.  I keep trying to get her to wash her face but she’s just tan.  Our trip was wonderful.

Natalie is up and around.  I really mean up and around.  She likes to navigate the house.  So when we got to Mexico she was exploring right away.  She learned the number of the stairs and then how to get around the pool to come back in the house.  Well she did not get the last one so well.  Tom went upstairs to get Lauren’s bag and heard a splash.  Nat was in the pool.  She was not frightened just was laughing.  We also got stopped on our way to the airport by the federales.  The guy threatened to take us to the police station.  Tom dug in his wallet and gave him every bit of cash he had.  The federale let us go and off we flew to catch our 6am flight.

Natalie got back the cognitive testing and as thought there was not much change.  I have talked to several people that have said the testing is bogus as long as she is improving.  There is not a norm for Blind TBI testing.  This is all virgin territory.  Dr. K did say that the anger and depression is gone.  That Natalie was a happy person.  She is using Natalie’s case for her continued education that all Psychologists are now required to obtain.  It helped that I went to the TBI support group right after the appointment.  I found Natalie was very fortunate to have progressed so far..  Most of these people have a loved one still in a wheelchair or not able to feed themselves.  We are so lucky.

While we were gone sister, Liz perfected Tom’s resume.  I am always amazed at her intelligence.  We are so grateful.  We are also grateful to Tom’s graduating class.  Tom went to a small Catholic high school in Cedar Rapids, Iowa.  They sent out a blog blast to their classmates about Tom.  When we got home from Mexico there was a stack of letters and cards saying things like they were praying for us or they were thinking about us and how sorry they are for what has happened.  Some even enclosed money.  We were so touched.  It was great to happen as we were returning to a horrible job market.  Also while we were gone Max got a job and Derek got accepted into Embry-Riddle.

Laura is home this weekend to take stuff to Mexico that we could not buy there.  I need to get back to her.  Loads of love and Bessitos.

Nancy aka Madre

 

February 16, 2009

Dear Wonderful Friends:

I want to take a minute and thank people for getting back in touch with us.  I have reconnected with so many great people who have had monumental influences on all of us during these trying times.  Who we are is the sum of these parts.

Natalie had a great Valentines Day.  We made 100 iced and decorated cookies for her work and art class.  We had some extra to give to some others.  We brought Maximous home for the weekend.  Tom was able to get some jobs for the holiday.  So it was just Nat and I for Valentines Day.  My mistake was to let the huge, 80 pound, head twice the size of mine dog into the house without making sure the cat, Buddy was outside.  Two days progressed and I assumed the cat had ran out at the first opportunity when I left the doors open. NO!  At 4am on Sunday Max woke me up saying there was an emergency, to come quick.  I ran downstairs and found the cat stuck behind the toilet, the dog outside in time out and stuff everywhere.  I mean it was like in the cartoons or movies.  Stuff was strewn from about 5 shelves.  It think the cat got the best of the dog.  The cat had some kind of wet on him.  His hair was like the dog had licked it to death.  The dog had scratches all over his face.  The decision is the cat won.  I put the cat in bed with me, cleaned up the area, and put the dog in the basement garage.  All was quiet so back to bed we all went. 

Nat’s cognitive tests are not coming back with much improvement.  I don’t get it.  We see more of her coming back everyday.  This is just not in our heads.  So I am bracing myself for the comprehensive meeting coming up.  Natalie is constantly doing better.  She comes upstairs in the mornings by herself.  She plans lunch and outings for us.  She is taking swim lessons on Mondays and Wednesdays and walking about 15 miles a week.  She knows how to dress and can decide what needs to be done to accomplish things.  I think the test has specific questions to be answered and she has to say certain words.  Natalie knows the answers but not their words.  So let’s hope that this is a glitch only!!!!

We are planning on going to Mexico next weekend for 10 days.  This is a much needed vacation and a chance for us to check on our house in Playa Del Carmen.  We haven’t been back since Natalie’s accident.  We are hoping we can vacation and get some stuff done.  Natalie will be with us.  We want to find someone to help us with her down there.  I don’t speak the language real good.  Anyway we have never been there for 10 days.  We love it down there. Tom has not found a job yet so we are taking advantage of his time off to spend the time.  I worry about Tom just because of the economy.  He has such great talents.  He comes from that generation that their identity is wrapped up in their work.  Tom has worked since he was 12 years old.  He delivered newspapers and stacked returned soda bottles.  He and his father steamed cleaned carpets on weekends all when he was only 12.  So he is trying harder than ever to get a job.  He has been working side jobs through out.  Some of this has just expanded his knowledge of the many venues in KC and helped him get back in touch with the server.  So we plug along in this horrible economy.

I refuse to be down.  I called sister Cynthia and asked her whether we were living in the worst of times and the most exciting of times.  Who knows?  Just day by day and the help of God and good friends make us realize how lucky we are.  Stay close and don’t be afraid to call.
 
Love,
Nancy

 

January 29, 2009

Yesterday was a hard day.  I guess I should expect to break down every once in awhile. 

Yesterday Tom has his Cardio version done.  We have been waiting for 10 weeks to adjust his blood not to have clots to do this procedure.  Tom has had an irregular heart beat since those supposedly family oriented bosses and he parted ways.  So yesterday he went to the hospital at 11am and was released around 2 to come home.  His heart is beating correctly and we have great hope that the heart beat has now been corrected.  They put him to sleep for only 3 minutes and shocked his heart back into rhythm.  This is considered a relatively easy procedure but they do it in the cardiac wing and it is messing with his heart so I had trouble keeping my emotions in check.  I brought him home he went to bed to sleep off the drugs. Today he is better.

Natalie is always a blessing.  We have watched her grow and relearn all about everything.  It is so encompassing.  One of the harder things to settle in my mind is this is now my career.  I would of course have in no other way but it is so finalizing.  Anyway I am please to say that Natalie’s foot is no longer in pain.  We are working to wean her off of her drugs but we are doing this slowly so we can watch which drug side effects disappear and make her life more comfortable.  Nat had a repeat cognitive level testing this week.  The lady that tested her had not seen Nat for 7 months. Where she was 7 months ago is not where she is today.  The results won’t be available for several weeks but I am looking for improvement.  Nat continues to go to the Y with her dad or me or Max.  She is up to 22 laps around the track and 30 minutes on the bike.  She swims a few strokes under water and we have a regular routine to work out in the pool.  She loves the water.  She goes to art class every other Saturday and is learning Braille.  She is very busy.

I love watching the Australian Open.  Roddick is getting beat by Federer.  I miss you all.  Please send a note or even an email. 

Love, Nancy

 

December 31, 2008

I have struggled with saying goodbye to all of you who have supported my family through this surreal time.  So I think I will keep the blog open and just update at will.  I know that 35-40 of you are family so you will always seem to be interested.  I have asked Cynthia, my sister, to help me end 2008 with some thoughts.  I know she is so eloquent.  She actually writes for Hollywood.  She was the creator of The Profiler and started out as a staff writer for Thirtysomething.  Anyway it is time I start this update.

First you should know that Natalie has an email address.  If you feel you want to communicate directly with her;  nsz23@comcast.net.  She has this program that reads to her your emails.

Natalie continues to progress. Thank God!  I am so afraid of the day she levels.  I see hints of things to come.  They said in Rehab that you will first see windows and then they will eventually become part of her everyday lives.  Natalie freaked us out on Christmas Morning.  Tom and I were sleeping and in she walked to our bedroom. She lives in the basement and we live on the main floor.   She told us to get up.  It was Christmas.  I found out that she had woken everybody in the house. She walked from the basement up to the second floor, woke up Laura.  Then she walked to Max’s room on the same floor and woke him up.  She then wanted a glass of water.  She made her way downstairs and got her a bottle of water out of the refrigerator.  This is when she woke us up. She went back upstairs and crawled I bed with Max.  She went back to sleep.  Wow what a great Christmas gift.  Thank you God!!

On December 18 we went to Auburn to watch Maximilian graduate.  Tom being costs conscience insisted we drive.  Derek flew because we can only hold 4 in the car.  We picked up Laura in Columbia and off we went. At midnight while we were all sleeping, Laura pulled us up to Villa 1241 at Callaway, only 45 minutes form Auburn.  Graduation was wonderful. Like all true Saunders/Rowans I gave a standing ovation to every important part the program made.  I was the only one standing but nonetheless…  We gathered Max’s belonging of 4 and a half years, cleaned his place that had not been dusted for 3 and a half years, loaded a 17 foot truck and headed home.  Derek and Laura were in either the truck or helped get Max’s car home.  We were to caravan across country.

We stopped in Birmingham to see Daddy and Ann.   The house was covered in
Christmas.  Susan drove over from Atlanta.  We met our stepbrother’s new girlfriend.  Liz and Becka and I crisscrossed for only one night.  It may have been the best night ever.  I adore my family as I get older. We loved seeing my niece, Sarah Ellen, and her family.   Her new husband is a kick in the pants.

We got home Christmas Eve Eve.  I ran like a mad woman to finish Christmas.  Christmas Eve Laura and Max played Santa and his Elf for my Blue Springs Women’s Civic Group.  I was amazed and touch at how they embraced the whole idea.  I was proud.  We make money for acting as Santa that funds scholarship at the local high schools for graduating female seniors.   Nat and I helped them get dressed.  She loved feeling the beard and the velour of the suits. Her visual memory keeps her from being completely in the dark.

It was beyond words to have Natalie with us this Christmas.  We reminisced about last year, where we were at this time.  Max sat next to Nat as she opened her stocking and had her guess what each this was according to feel.  She guessed about everything.  We had a more modest Christmas but the best one in my life.

Natalie is becoming more independent.  The kids keep saying the Bitch is back.  I guess they just mean she is feisty.  She probably will never be completely what she was.  Natalie now gets up in the morning and comes upstairs from the basement on her own.  Often she gets tired of waiting for us so she will make her way into my bathroom and draws herself some water and get in the bath.  She cleans herself and gets out.  She can redress herself with little help.  She come back into where we are and is happy to be clean and pleased with herself for being so independent.

 We still see that there is a long road to get to where she needs to be.
She was doing worksheets that challenge her word skills and has had trouble completing simple cognitive thoughts.  I know she can do these worksheets and I can see her frustration trying to find the words.  They seem to be on the tip of her tongue.  I hope by the time we work though these hundreds of worksheets she will find this easier.

Natalie is so thrilled to be around people.  She is such a social person.  Please take time to write or call or even come visit.  Your visit often times helps in her recovery.  It is the beginning of a new year. I have great hopes that Natalie will continue to come back to us.

Thanks for caring!

Nancy

December 5, 2008

We are coming up on a year.  Yesterday Natalie and I walked though the SICU area to celebrate how far we have come.  It was very emotional for both of us but unbelievably heartwarming as well.  Various nurses come up to her, she hugged them and they couldn’t quit toughing her.  All I could think about was how many people don’t make it in their care.

I do have some good news.  The family that was in SICU waiting room with us who had to take their daughter home since their insurance ran out.  I saw that family at the Rehab unit at KU about a month ago.  There she was.  Getting therapy.  She was not as lucky as Nat.  She seemed distant, almost comatose.  We are so fortunate.

We had a great holiday.  Nat makes such progress when her siblings are around.  They even dote on her.  Max took her swimming, Laura helped her groom, and Derek spent hours with her.
They all walked her around the lake together.  They are so close.  Yet another silver lining!

Natalie seems to be progressing wonderfully.  I can’t tell if it is because of her 12 days of Sensory therapy or just the natural process of healing.  I have noticed that she seems to be in control of her life instead of the injury.  She seems to have turned a corner.

I think I am going to stop this blog at our year’s anniversary.  You have all been so good to listen to our lives and pray for our healing.  Her one year birthday is 12/11.  So I will probably talk with y’all one more time.  This has been such good therapy for me.  I know I will miss it.  It has started to snow…

Love, Nancy aka proud mother

November 17, 2008

Alright!  I am not going to be so down as I was for the last update.  No one wants to have a drag around.

Natalie and I have had a lovely week.  She has settled into her schedule.  She loves the Tuesday and Thursday people who come to help her in her living space.  They both seem to jive with her personality.  One of them is a friend from before.  She and Nat get out away from the house and go to the park or grab lunch.  Her person who comes on Tuesday does the house keeping and reads to Nat.

Natalie started this new therapy this last week.  Her Middle School friend, Drew’s mother who loves Natalie has this new fangled theory that Natalie is participating in.  It is called Sensory Center Learning.  Their basic premise is that if your Vestibular, Auditory, and Visual senses are in line you can learn faster and increase your cognitive skills.  You go to her office they put you on a table that rotates in all directions.  They then put headphones on and play opera at all different volumes to stimulate your auditory nerves. Next they show you different color of lights to work on your visual.  Since Natalie has no sight the third one is eliminated.  They do this for 12 days an hour each day.  Natalie is on her 7th day.  This is supposed to be revolutionary.  It is also fairly expensive.  She is doing this out of the kindness of her heart because she knows Natalie could be a test patient and just loves Natalie. It may be worth every penny even if we had to pay for the services.  I will be curious to see if it works.

We joined the YMCA this week.  The pool at her high school had become too cold and the Y offers much warmer water so we joined.  Nat and I went last night for the first time without Tom.  He was working a side job.   We had a great Saturday night swimming and using some of the exercise equipment.  It was great just feeling the life back in Natalie.  I love being close to her.

Everyday that Tom is home we get a new project accomplished.  He keeps me from being lazy.  I know it is hard having him look for work but this time in our lives it has been a God send to have him home.  He and Natalie live for their time together.  She thinks he hung the moon and she just inspires him.  What a wonderful connection they have created.

It’s getting cold here.  The kids will all be home for Thanksgiving.  Then we celebrate Nat’s birthday.  She made it to 25.  Max graduates and is planning on moving home.  Derek is growing up to be a driven person and establishing goals and accomplishing them.  And then there is Lu.  I love her living close to home. 

Love to all and have a great Thanksgiving,
Nancy

November 10, 2008

Dear Everyone:

Natalie continues to improve.  She has begun to put together whole thoughts.  She is trying to learn to plead her case.  That means stringing together sentences to make a complete statement.  This seams to be her biggest hurdle these days.

Nat is working.  She started her job 2 weeks ago.  She is employed by a workshop that assembles writing pens.  It is boring but it teaches her to go to work and do the things that you need to do to work such as use the bathroom or eat her lunch.  I am hoping we can do this for a few months and then do something more competitive.  It is a great start.  They had Halloween at Alpha Point so Nat dressed as a bad Health Inspection.  She wore a diner’s waitress with a huge spider on her head.  She helped me carve the pumpkin and hand out candy to the kids trick or treating.  She loved Halloween.

We have been walking around the lake.  It is 1.2 miles.  It takes us about 40 minutes.  She is constantly on me about being too fast or being too slow or being perfect and did I not love being perfect.  She and I wave at everyone.  We are the friendly mother with blind daughter.  We had a special moment the other day. While walking we saw her first teacher, Mrs. Nueweg, who was there for her when we first mover here.  She passed us, jumped out of her car, and ran to give Natalie a hug.  It was special because Nat felt so right with her that she could tell this woman who had such an impact on her life that she was blind.  We all cried right there in the middle of the road.

Natalie is working hard to build her endurance.   We take walks every afternoon.  She is trying to keep her weight down.  She has never been so hungry.  She is very independent.  I simply hand her her clothes and she gets herself dressed and upstairs.  She explores the house.  I just hate those people who Tom worked for.  Natalie will probably have to learn a new house, a new city, and a new life.  We had settled that we would be here forever.  This meant that Natalie would never have to change and could remember what things look like and where she was with her visual memory.  Now she won’t have that luxury.  I just get angry when I think of it.

Tom’s brother George is here with some clients for the American Royal.  We are on our way out to dinner.  On  11/11 it will be 11 months past accident.  I had a moment the other day at tennis.  Natalie was there with me because Tom was having a stress test.  I was playing great and then I caught a glimpse of her in the corner of my eye.  Where had my beautiful daughter gone?  My vibrant, independent woman who was Natalie.  Then I remembered how lucky I was to have her no matter what.  So count your blessings this holiday season.  It will be the best ever for me.

Love to all, Nancy

October 23, 2008

It is so quiet aroung the house. I guess it is like that children’s story about their house getting too small. So they thought they would look for a new place to live. First they had their relative come to visit. As each new group arrived they felt they had a smaller house than ever. Finally after everyone goes home the house feels bigger than ever. I guess it is what you are used to. Now the house is quiet. Natalie started her first day of work today. Tom and I dropped her off at Alpha Point. This is just the beginning of our association with them. Natalie is working in their workshop putting together pens. It seems so menial but it is a great place to start. She goes every Wednesday and Friday at 9:45 to 3pm. She won’t make much money but it gets her out. And it gives me a break. So things progress.

She had her doctors’ appointments this last week. She had her botox shots. It is amazing that she can take the pain these shots give. They shoot them right into the muscles of her thigh and calf. She has had a few friends who have not been able to face her since the accident. They just stay away and this is hard for her. She discussed this with her neuro psychologist, Dr. K.

Natalie has had some confusion at night maybe due to the drugs. I find her wandering and then she shouts out to us that she is lost and needs help. I have the doors to go outside barred shut so she won’t go out. She loves living in the basement. If for nothing else the floor is carpeted with soft carpet for her feet. I just give her clothes in the morning. She follows her rope to the bathroom to brush her teeth and put on her lip gloss. Then she follows another rope upstairs to get her breakfast and be done for the day.

Tom is busy either working side jobs or looking for a job or painting the house or excercising or etc. I am doing my volunteer stuff. My house is decorated for the fall. Max is due home tonight. He and his buddies are driving up to Muncie to see his friend Darius play at Ball State. They are undefeated. Derek has found the fun of camping in college. He also sells game day t-shirts during this football season. Laura was home last week. She is as wonderful as ever. So life is improving one day at a time. I think of you all often!

Love, Nancy

October 7, 2008

Dear Everyone:

I never thought that Natalie would ever drive again.  I was wrong.  Last Sunday we had a beautiful sunny day.  It was unusually warm so we decided to take the boat out one last time.  It is not easy for Nat to get in and out of the boat.  She is getting much better and more agile. We were the only ones on the lake.  We put Nat behind the helm and away she drove.  She was so thrilled to be driving.  On the water she does not have to worry about staying on a pathway.  She could follow our directions and would not hit anything.  She said it made her feel free.

We had a heck of a week last week.  Our stock in Wachovia fell hard, Natalie is still struggling to get by and Tom continues to search for a job in this horrible market.  Tom went to have his stress test done and they said his heart rate was already too high to do this stress test.  We felt like our world was crashing yet again.  All I could do was work in the yard.  Once again I watered the flowers with my tears.  Thanks to my friend Sally she recommended I take charge and find out how Tom was really doing.  He is your typical guy and had not told them of our issues so they did not know to give him an anti stress drug.  Once this happened the world started to come back to us.  I still refuse to be down.  I have to stay strong.

Natalie and I continue to work on her endurance.  We are now walking around the entire lake in the back of my house.  This is about 1.1 miles.  It takes time but she loves it.

Our new goals are to get her into Alpha Point by starting with art classes this Saturday.  Nat and Tom are still going to water aerobics every Monday and Thursday.  We are looking into yoga.  Nat and I worked at the Obama headquarters stuffing envelopes last week and we want to go back.  She gets botox again on Friday.  We hope this will help control the pain she still has in her right leg.

As the leaves begin to change color and the air gets cool I am reminded that we have been doing this for almost a year.  I won’t let myself go to this time last year when Natalie was still here with us.  I am so blessed to be given this second chance at having her.  There is nothing more wonderful than hearing her say she loves me.  God is good.

Nancy

September 29, 2008

The last I wrote to you I was getting ready to celebrate the twins 21st.
Tom and I went to Columbia and rented the private room in a bar.  It was raining horizontally that night.  We decorated with Glow in the dark stuff on the tables.  I ordered a gross of necklaces and a gross of bracelets.  We had about 150 people come even though it was raining.
Max and Derek flew in for the occasion.  Natalie went too.  Once we got to Columbia Laura took over the care of her big sis.  She helped her dress and her friends helped with her make up.  Max stayed right next to her at the party.  All of Laura and Derek’s friends visited with her.
He even danced briefly with Max.  We left at 11:50 to drive back to BS.
Tom slept and Nat kept me awake on the way home.  The boys stayed in Colombia and came home the next day.  It was a magical birthday.  We made pulled pork that they let us bring in to the club.  The best part was having all of my family together.  Photos have been uploaded with more to come!

We weren’t so sad to say goodbye since we were going to see everyone again the next weekend.  On Thursday after Columbia we started our road trip.  Since we are being more frugal we decided to drive to the Auburn/LSU football game.  We started out with the Element loaded down.
Nat gets the front seat because she gets nauseas so Tom or I rotated in the back seat.  Natalie became our copilot.  She reminded us to place our hand on the steering wheel at 10 and 2.  She wanted to know where we were periodically and every time we coughed she wanted to know if we were okay.  She did not sleep for the entire 16 hours.  We were worn out and fell in bed at the Callaway house.

The next day Sister Susan and Jon and daddy and Ann arrived.  The kids came over from Auburn with Laura who they had gotten from the airport the night before.  Derek had stories to tell about the fans on the highway coming over from Baton Rouge.  We went to dinner with everyone at the Inn that night.  Natalie tried really hard not to say the F word in front of Daddy and Ann.

Saturday was the big game. Max’s friends who are caterers in Birmingham invited all 10 of us to their tailgate party.  My family arrived at Max’ s apartment to group to go to the party.  Max and I walked across the campus together after shuttling everyone to the tailgate site.  Natalie had to walk quite a distance and had no problem.  She was social but did not have a sibling leave her side.  Susan is so good with her.  She anticipated everything Natalie seemed to need.  We had a wonderful time.

We wanted to get into the stadium before the eagle wings its way around the stadium to start the game.  We found our places and plugged Natalie into her head phones.  We had gotten a ride to our gate with the handicapped services.  Natalie still needed to get to her seat.  She seems to handle crowds.  There were 90,000 plus at the game.  At half time she and Laura caught a ride with the Red Cross back to Max’s apartment.  They made pizza and watched the end of what turned out to be a great game.

We left the next morning to put Laura on the plane and then see Warren and Bookie Woodard who live in Gwinnett County in Atl.  We had not gone to bed until 2am so we were beat.  Cousin Rachel came to dinner that night.  She and Nat are close.  Rachel invited Nat to her AA meeting. It was a most special night for both of them.  Tired or not Bookie and I went and picked Nat up since Rachel has a curfew.  Bookie and Warren have known us for 23 years and we just take back up like we just left off with each other.  Warren also loved having Rachel there.  He told her she was the coolest chick he knows since she would drive so far to see Natalie.  What great friends.

We left the next day to head to Becka’s in Boone, NC.  We know we would be going on curvy roads.  Nat handled these wonderfully.  WOW she never ceases to amaze me.  Becka is so easy to be around.  We loved seeing Willis and Jessica.  It is hard to believe they are a senior and a junior. While we were there we went to the Obama headquarters.  Becka had several friends stop by to meet Nat.  They had read so much about her. 

Nat touched and fed Jessica’s horse, Cash.  She heard a slaughter of 6 of Becka’s cows.  But the most important thing she did was climb a mountain that was steep to get to the top of the world.  She said the air was sweet up there.  She had to stop a few times but she made it. We were at least 4000 feet above sea level.  She hiked about a quarter of a mile.  Just as we got there my cell phone rang.  It was her neurophysiologist, Dr. K.  It was for her.

We drove home yesterday 16 hours.  We got home around 11pm.  We were nervous about gas supplies but we had no trouble.  We were exhausted.

Yesterday evening we left for Columbia.  Laura was in charge of her sorority’s annual fundraiser that just happens to benefit Service for Sight.  She volunteered to do this before Nat’s accident.  They have this competition and also bring in a guest speaker who talks about ethics and values for the entire student body.  Last year they brought in the guy Will Smith played in the Pursuit of Happiness.  This year they brought in Jim Corwin who started the Animal Planet television station.  Laura introduced him.  Before this they talked about their foundation that supports the Service for Sight.  They said they were going to do something this year close to our heart.  They were going to give half of their proceeds to the Service for Sight and half to Natalie.  Laura was flabbergasted.  They all knew about Nat because Laura had told them about her during recruitment this last fall and also they knew because they all woke up when we called Laura and prayed in a circle for Nat before Laura rushed to the hospital.  Several came to see her while she was in the hospital.

Tonight I have been asked to speak about Natalie’s story at The Rehab Institute’s annual fundraiser.  I was so flattered.  People seem to care so much.  So thanks to you for caring too.  We love you all and feel that we have been magically blessed.

Nancy AKA trip survivor

September 9, 2008

Happy Birthday to me. I am soooo glad my 52nd year is over. When I think back on last year…here I thought that it would be lucky since it was the number of cards in a deck.

Anyway on to progress. Tonight Tom and Natalie took me out to dinner. Natalie only let out one F bomb where others could hear. I notice people stare at her. Perhaps being sightless is a blessing. She handled herself beautifully. She ordered her steak medium but I had to get the waiter to lean closer to hear what she was saying. I wanted her to place her order. We all enjoyed the meal immensely. We all ate way too much. Sometimes Nat eats too much and too fast. We had plans to get Maximous from Ray and Rachel for a few days. They live in the country off of curvy roads. Anyway that $35 steak did not look as good coming back up. We should have monitored how much she was eating and how fast. She seems to be in great spirits afterwards so we just go on with our plans and remember to bring a bucket next time.

Natalie graduated from the Rehab Institute yesterday. She has been going there since March 28th. When she started there she could not walk, talk very rarely, and could just barely help us get her dressed. Now she gets up and makes her way to the restroom all by herself. She also made a brownie cake with very little assistance to take to school the last day. We three Schneiders that were saying goodbye to the folks at The Rehab Institute could not hold back the tears. There is no looking back my mother used to say. The next step is to have people come into the house. They start Friday.

Tom spends about four hours a day pursuing employment on the internet, phone, etc. He is reacquainting himself with old friends. There is the silver lining. We plan to travel to the Auburn/LSU game next Thursday and then plan on heading up to the mountains of western North Carolina. Tom has never seen where sister Becka and Billy live. This may be his only chance for awhile.

My heart is torn with the thoughts of moving. I can’t imagine being without KC. The weather is beginning to show signs of fall. I can’t believe the summer is over. Let’s just hope things get better. In the meantime…those that know me know I was never much of a card player.

Vaya con dios,
Nancy 53 years young!!!!

September 2nd, 2008

Dear Everyone:

I know that it has been forever since I wrote an update. SO much is going on. I was so upset about the situation with Tom that I was afraid I would sound like a downer. It is against my personality to allow myself to be down. So even the fact that Hurricane Gustav is going to hammer Baton Rouge, I am okay. Derek does not know whether to evacuate or not???!!! So onward with the good stuff.

…Natalie is doing great. I am constantly amazed at her spirit. She inspires my every day. I feel so blessed to be exposed to such miracles.

Natalie is now only going to the Rehab Institute for Physical Therapy. This means she has graduated from Day Hospital. I take her for only an hour 3 times a week. I know she just misses the social part but she is capable of doing all that they need to teach her. So now you ask what is next. She has someone come in for 2 days a week to the house to help her for 4 hours. They help her shower and clean her space. I have her read the paper to Nat and take her for walks. She is about Nat’s age. I got her through a service. It just so happens that the person who schedules these care givers is an old acquaintance of mine, Wendy Mastilak. Max played baseball with their Matty when we first moved here. One of those serendipitous things.

As far as her learning to be blind…She has a case worker who will come into the house starting next week to teach her to use the cane and Braille. We will find ways to fill in with social activities. She needs to be competitive to go to Alpha Point. She can work at Alpha Point to be monitored for acceptance into the competitive program. She just has to make her way to the bathroom by herself before she can work there.

Natalie can get herself with some verbal coaching to just about anywhere in the house. I will find her stuck in corners but she keeps on trying. She helps unload the silverware, fold towels, and picks up her own room.

Natalie is fully continent. This speaks so highly of her future quality of life. She can also feed herself, dress herself, and bathe herself. She can talk just about anything. Her emotions have reappeared with laughter, anger, and sadness.

We plan on traveling to Auburn when they play LSU. Daddy has gotten tickets for four of us, Susan and Jon, and he and Ann. We are staying at Callaway Gardens which is only about 45 minutes from Auburn. Since we are driving, we hope to do some exploring on retirement places afterwards. Don’t be surprised if we end up in your neck of the woods. Nat will of course go with us.

Since I have brought up employment, If any of you have any leads, let us know. You all know what kind of dedication Tom has. SO please help us out. We need a place where Natalie can thrive and Tom will be happy.

So watch the weather channel. We have houses in Houston, Baton Rouge, and Playa all of which are in hurricanes way. It is time for our luck to change. You gotta believe….

Love to all,
Nancy

August 15th, 2008

Dear Friends:

Today Natalie is at the Rehab Institute where she goes every Friday. This place has been awesome for her. I hope we can find as good of care where ever we move.

By saying this I have gotten permission from Tom to let y’all know that he is no longer with Marriott here in KC. I am once again faced with those horrible three words, “I don’t know!” We have heard this all through Natalie’s recovery. This time however we are looking towards the future. Tom has been in the business for 30 plus years. His teams have taken care of all of the presidents since Jimmy Carter and their opponents. He has served 4000 dinner and had 15 precious minutes alone with Willy Mays. So now we set out again after 12 years to seek our fortune. This time we have to be cognizant of Natalie’s needs. So the New Adventures with Tom and Nancy begin.

This will take a long process to unfold. With this in mind we will continue to live in KC as if it is permanent. We are pushing to get Natalie into Alpha Point. Everyone that she works with from the Rehab Institute, KU and St. Lukes believe she is ready. So keep us in your thoughts. I am more of a believer than ever in what will be, will be.

Max left yesterday. It was heartbreaking to watch him and Natalie say goodbye. Natalie was very testy yesterday since he left. She is really going to miss him.

Tom is going to drive with Derek down to Baton Rouge and do some repairs on our house where he lives. In the meantime, we are sending out his resume and getting his an “at home office” ready. .As most of you know, if you are in the business you never have time to get personal stuff done. So now is the time.

We continue to need the support that you all have given. Thank you.

Love, Nancy

August 8th, 2008

Dear Everyone:

It is difficult sometimes to be so public with what has happened to our family. I am so proud that my children have had such support from family and friends. The criticisms that follow with any kind of accident can be harmful. We have chosen to live in the present rather than rehash what might have been if we had done things differently. Thank you all for showing support by not going there.

We had such a wonderful time on our vacation. The interactions between Natalie and her cousins were remarkable. Each one of them took there turns being her sighted guide through out the resort where we stayed. She practiced walking every day. She handled stairs, the woods, and hills with some struggle but still was pushing herself to keep trying to walk. She has struggled to use her entire foot. She has worked to put her heel down to not wear out the muscles in the ball of her foot. She has had to learn to voluntarily put it down. She’s now doing this without being told.

She had trouble with her four letter words but really tried to clean it up. We were so delighted to get part of our Natalie back that we would chuckle when she would cuss, etc. We maybe should have used this time to leave those words out of her vocabulary.

There were special moments with each family member. She seemed to draw a crowd where ever she went. Her cousin from Atlanta who has had some issues spent time with her one whole day. They even place their palms together to feel the energy they were giving each other. Nat cried when she went home early.

The first night we were there Natalie couldn’t sleep. I was mad at myself for possibly screwing up her meds. Anyway we sat up to the wee hours of the morning. She told me she could not sleep because she was swimming. She was soooo excited that she had actually performed a stroke in the water that she could wait to get back to it. We swam everyday. She learned to put her head in the water, flutter kick, breast kick and to trust the water. It was another one of those miracles. Natalie swam for Blue Springs High School and year round since she was 8. It is just natural for her to take to the water. I guess those thousands of laps she swam are paying off.

We spent the first day home getting our toes done and relaxing. Derek even got his nails done. Tomorrow is a big day. Natalie will have the filters in her veins removed. They said the procedure is scheduled for 10am. We have to be there at 8:30. They say the surgery will last as long as it takes her to quit bleeding. They will want to watch her for about six hours after the procedure. I am planning on taking things to do for that time. She may be better than we thought since she is no longer taking blood thinners or asprin. We have a dentist appointment at 4pm. So hopefully it will be quick and they were just painting the worst case scenario.

Everyone is asleep.,,,

…I am going to be so broken up when my kids start to go back to school. Max leaves in a week and a half, Laura leaves Sunday, and Derek has two and a half weeks. We plan on having a 21st birthday party for Laura and Derek on the 10th and hope to go to Auburn for the Auburn/LSU game on the 19th. Max graduates in December. We will go back to Callaway then as well. Hopefully Susan and Rachel will be here in October. We want to go to Mexico in November and then the holidays. We hope to have friends visit and us visit the friends. Natalie did pretty good traveling. She just had some nausea.

I am continually amazed what love will cure. We are so blessed that it is abundant and that all of you care. Call or write or whatever. We miss you all.

Love, Nancy.

July 25th, 2008

Dear Friends and Family:

I haven’t updated lately, sorry. I am having what I refer to is a breakfast for “Mothers of Daughters with TBI and are Blind.” In other words a coke and a Hagan Das chocolate popsicle. So on to news…

Natalie had her cognitive skills test follow up meeting yesterday. She is at a below average level of IQ. They said this would do nothing but go up with her continued increase awareness. So yes we still have far to go but she is able to improve. They also reminded me that is where people who are recovering from a TBI are by this time post accident. She may be a little further. She also talked about the mood that Natalie has had. She still needs a lot of encouragement and support from family and friends. All and all she was pleased with Natalie’s progress. We are 8 months past accident.

We go to doctors 2 or 3 times a week. This week we visited the Ophthalmologist, DR. Yu, who gave her a clean bill of health. He wanted to see the prosthetic eyes. We don’t see him again for 4 or so months. We leave the eyes in unless we get an infection and then I have to take them out. It makes me so uncomfortable to have to deal with the eyes.

We also went to the pulmonary guy who then orders the removal of the filters in her veins. There are 2 of them. The one for the upper body will be removed through her neck. The one for her lower body will be removed through her groin. This is a half day out patient procedure that does not require a general anesthetic. They just make her groggy like when you have a colonoscopy. The reason to remove them is they one day could build up and create clots. Since they know why she had a clot and there are no reoccurring clots they feel they need to remove them. The body learns to absorb clots by changing the make up of the blood. They do not go after individual clots. He blood no longer makes clots. Her filters were placed to catch any clots that may have broken lose. If she were older and had clots that were unexplained they would leave them there. Anyway they will send the referral and we will get a call for an appointment.

I took Natalie to see The Dark Knight this week. The local theater had the headphones that tell you the stage directions for the movie. This way you know what is going on. She loved it.

Nat and I have been over to the pool in the neighborhood pretty regularly. She and I go in during adult swim. We have become pretty tanned. We also have finally gotten Tom’s boat in the water and Natalie, Max, Derek, Tom and I went out for a maiden voyage last weekend. Natalie had a smile on her face the entire time. We went in the water but she didn’t. We were concerned on how to get her back in the boat. She had no problem stepping on to the boat.

I got the neatest note from a stranger, Meg Schneider. Y’all should look at it. It is on this website in the notes section.

We head to Callaway Gardens, GA on Monday. It will be her first time to fly. All but Laura are traveling together. My entire 30 plus family will be there. Many of them have not seen her since the accident. She is most excited to see everyone. It will be a truly special time for all of us. We hope to keep doing our after dinner walk. We also want to swim and maybe one of her cousins can coax her into putting her head in the water.

Natalie is now continent. She no longer uses he wheel chair. She asks questions. She laughs, cries, and gets mad, etc. She gives ma a kiss on the cheek and tells me she loves me. I am so fortunate to have her in my life. Grateful is an understatement. She is here.

Love to all,

Nancy

July 13th, 2008

Postings seem to be more taxing for y’all to read and I love you all so that I would never want for this to happen. Thanks for hanging with us.

If there is nothing that I haven’t learned in these 52 years is that life has cycles and we always get through them. Human beings never quit amazing me as to how they adapt to circumstances. My family is a perfect example of what this means. Natalie has given us the gift of showing this spirit. This means she inspires us all. It was just last night when Derek came in after his night out to tell me that seeing Natalie was the highlight of his day. Laura had come in with him and had crawled in bed with her and Max just blows me away with his generous spirit. I took Max and his friend, Josh to lunch with Natalie and me to Pierpont, a swank steak house in Union Station. I had to run back out to get another of the bags we schlep around for Natalie. I came back in and the hostess/manager was crying. She asked if the girl I brought in the wheel chair was my daughter. Then she wanted to know if the man saving our spot in the restaurant was my son. I said yes. She said he had lifted Natalie out of her chair in such a loving way that it had made her cry. Wow! What a silver lining.

Natalie has graduated from 5 days a week to 3 days a week at her rehab facility. She misses her friends at “school.” But we are busy keeping her busy. We have doctor’s appointments constantly. I get them so confused. She was tested for cognitive skills last Thursday. The test took a little boy who was severely ADD 8 and 1 half hours. It took Natalie 3. We went to KU to do this. She was a trooper though it all.

We went on Wednesday to have her ultra sound done to check for any more blood clots in her leg. She has a filter in her main arteries and veins to keep her heart from being bomber by the clots that happen so often in sedentary patients who are and were in comas. It is time to remove this filter. This is done through the groin and is considered noninvasive. I don’t know when they will do this. Good news is there are no more clots.

Our new person started last week. I decided to hire a person who was Nat’s age to help her stay stimulated. I remembered that the doctors implied that the first year is real important in the recovery process. Kim just talks to her and takes her places. They went to the pool on Tuesday and watched BET together. She is just to talk to her about their similar interests. Natalie really liked her. It is just too bad that she is going back to teaching school in August.

We went to a wedding reception last night everyone that is except Tom. It was beautiful to sit there with all 4 of my children. It was not too long ago that I my have only been sitting with 3. Max’s BFF Josh Fink’s older brother was married. He had a tremendous effect on Max’s life. Natalie did great but at the end of the service I looked at Natalie. She was crying. I told her not to worry, that this would happen to her someday. Who said she lost her emotions with her brain injury?

Tom was at his 40th high school reunion in Cedar Rapids, Iowa. His restaurant manager resigned so he has had to open the restaurant this last week at 6AM. This means he should come home around 3 or 4 to have a full day. Of course he is working to at least 5 each day. So 11 hour days!!! He therefore had to leave for Cedar Rapids after work on Saturday. Did I mention that he has not had a day off until today since the beginning of July? Anyway he seems to be handling it. He expects to spend this morning with Char, his sister. She is trying to do the labor to rebuild her house on her own. We are so fortunate to have such good friends who have stepped in to help her. Tom grew up with the Erusha’s. Jim was his best friend from age 5. They had 6 children who grew up and are successful in various professions. They have opened their hearts and time to help Char. Jim’s wife, Denise has given her time. Tom says the town is destroyed. The area he grew up in is the worst. Thank God for good friends.

Maximous is barking at the door to go out. Hope all is well and life is not controlling everyone you are controlling it.

Love to all,
Nancy

July 5th, 2008

Dear: Everyone:
We asked at dinner the other night, “What kind of fireworks do you want to get.” Natalie told us loud ones. She has begun to start understanding the consequences of being blind. I am hoping for the strength and words to get us through this. Everything else is getting better but her eyes. I really should not dwell on this. I am not strong enough.

We had a good week. Nat and I found the most wonderful new Primary physician. She was itty bitty and she had high heals on. Anyway, she first wants to look inside Nat’s body through fluids. So she will fast Sunday night and we will get her blood work then. Then the next step is she ready is to remove her filter for clots. This was put in while they looked at her organs to keep any clots from reaching her heart. The removal will be done through her main artery in her groin by an Anethsiologist. It will be done through outpatient status.

Nat seems to be tolerating her eyes wonderfully. I need to be better about her eye drops. I asked her if she was tired of the darkness and she said she was. I am looking for a peer to help her through this adjustment. I can’t speak because I am sighted. I hope when we get to Callaway her cousins will help her talk this through.

Natalie has a new brace that fits in her shoe. She is the only one at home who knows how to put on the brace. The Rehab Institute is aggressively stretching and training her foot to be in the right place. She is still in pain. Even the doctor told me I was wrong. The Botox would not have killed every nerve and she can be in pain. She does have much more abilities to flatten out her toes and foot. Let’s keep our fingers crossed and prayers.

She starts going to Rehab for 3 days a week. She has graduated to this level and on to the next. I have hired a young her age woman to help with her on the days she does not go to rehab.

Independence has new meaning today. I hope all are grateful for their independence. I miss you all!!!!

Love, Nancy

Saturday June 28th

I know I haven’t written lately but I have had a lot on my plate. Natalie and I have been to so many doctors that last week we showed up at ones we did not even have appointments. I need more organization to keep up with this. I went to Walmart today to refill her controlled substance, Ritalin, and was turned down due to my doctor not filling out a certain form with Medicaid. I ended up crying, paying for it myself, and happy that Nancy Wilson, a friend was close by to help me. All of it gets to me.

Natalie is doing well. I may be disappointed that the botox did not do more. I’ve come to the conclusion that her pain is in her head. If they killed all of the nerves with botox, why does it still hurt? So I won’t let her say she can’t do it. We have to forge on. This is probably a time that one gets down and needs a few pushes, after all it has been 8 months. Anyway, she talks pretty normal. She has a better memeory than me. She has had a lot of stimulation. Her Aunt B, Becka, was here with Jessica. The house seemed so empty without them and Natalie’s friend Lauren.

Tom and I have decided to scratch the trip to Mexico. If anyone is going that way, let us know. We need some one to buy us new couches. We really need to stick to the staycation plans we have.

Natalie went swimming today at the Waterfield pool. She has gone to the Royal’s game since we talked last.

So we are somewhat mundane at this point. Hope everyone is having a more exciting summer than mine. Love to all and stay in touch.

Love, Nancy

Monday, June 23

Just a quick post. Nancy said she will get an update out later, but wanted me to post these pictures of Natalie with her new eyes asap.

 

Thursday, June 19th

Dear Friends:

Becka and Jessica left today. I knew I did not have to be so sad because I will see her and Jessica at Callaway at the end of July. Still there was a part of me that understands the Seals and Croft song, “We will never pass this way again.” I just love them so.

Nat woke up a little sad, too, this morning for the first time in awhile. She said she missed Lauren. We solved that by calling her to wish her good morning.

I have finally kicked the pneumonia but have injured my rotator cuff. I think it is just strained. I am practically munching on Advil. I couldn’t help think of Cynthia and Jean and how they live with this pain all of the time.

Nat got her Botox and it is working some. Dr. Ladesich said it could take up to 2 weeks to get the full effect. Natalie has not been wearing her brace just her shoes and a different brace to sleep in. She is walking much better as long as she steps past each other step to get a good stride. They took “Jessica” the brace to modify it to hope they can make it work inside her shoes. She can walk on her own but is afraid because she does not see where she is going. They have decided to keep her til the middle of July to continue to work on her walking and stretching her arms. Natalie cooked a cake for her dad for father’s day.

Natalie got her prosthetic eyes this last Friday. They were in for the weekend for a trial basis. I was not so pleased with the way they looked. I guess I hope for more realism. I found out on Monday that one had moved. It was upside down. It looks a lot better now.

We went to Rhythm and Ribs music festival in the famous 18th and Vine area Friday night. All of us went. The music was wonderful. Natalie had to walk about 200 feet to get to our seats because the ground was so wet. She hoofed along like a champ. Becka and I loved the event.

I want everyone to stop and hope for the best for my sister in law, Charlene. She lives in Cedar Rapids, Iowa just down the street from where Tom grew up. She lost her house this week in the floods. She did not have Flood Insurance. It was not necessary. They had never flooded. She hoped for the best so she did not grab her personal things like pictures and such. She thought it would not get so bad. All is lost. So think about her and send her your positive vibes and prayers.

With all that has happened we are so fortunate to have all of you. Please, please stay in touch. We miss you all.

Love, Nancy aka mother

Friday, June 13th

Good Morning, All,
This is Becka, Nancy’s youngest sister, writing from Kansas City where I am visiting for a week with my oldest, Jessica. I thought I’d write a bit for the website since I’m here and seeing for myself what’s up with our Natalie…

Is it possible to be sad and happy all at once? Is that what they call bittersweet? That’s what I see here. Mostly it is beautiful, fascinating, loving, incredible! Nancy carries on a constant play by play, describing every bump on the road as they drive home. Nancy counts the grates across a certain bridge – there are 10, you know. Now we’re passing the dog park…how many dogs do we see today? Natalie says, “Mom you’re driving like shit (in a kind voice)”. Now we’re passing….all the way home. Constant dialog. Lots of hugs and kisses. Nancy kisses Natalie’s hand and in return Nat kisses her own. They think that’s funny! Natalie wakes up in the morning smiling…consistently. When I first arrived she had me hand her her water glass every minute or so…Aunt Becka she calls from her room where she’s not really napping, but resting and listening to the ocean or a cd. She loves attention, loves lots of folks around. Nancy’s right, she’s very social!!!

I used to be intimidated by Natalie and her edginess. Now I just wanna throw my arms around her. I’m typically quiet, so I remind myself to be more talkative so she knows I’m there. Or I touch her arm so she’ll know. Gosh, I could go on and on about the tremendous love that is here.

I think she gets so much from just being home. She listens to all that’s happening around her and keeps up with conversations and adds a bit of humor. She isn’t only echoing at all. She obviously adores her brothers and sister and it is so moving to see how well they care for her and attend to her. She brightens up at the sound of their voices. Lauren is here too and Natalie adores her. The feeling is mutual. Lauren is always a step ahead of whatever Nat needs which is sweet.

The most fascinating thing is how she sees. Sometimes I look at her eyes just to be sure she really is blind. For instance on the way to “school” the other day she asked her Dad why her black back pack was in his lap. When he asked how she knew it was there, she said she “saw it out of the corner of her eye”. That’s her humor…but you wonder…wow! Does she smell? Does she feel the floor shake when you enter her room? I suspect its all of those…hearing too! She is seeing with all her senses and her memory and it is nothing short of a miracle! I feel so hopeful for her.

Thursday, June 5th

Dear Friends:

It has happened. I thought I would never be so excited for any of my children to get a shot but…Monday Natalie gets her botox. We hope that this will solve many of her problems. First and mostly she should be able to walk with no pain. This means not as many pain pills which should help with digestion and elimination. All which will dictate her quality of life. Keep your thoughts good so these shots will do what we hope.

Today I think I may have solved the “what to do with Natalie” time between Rehab dismissal and Alpha Point. I have a great lead for continuing education for Nat. There are two teachers who work at Liggett Trail, our special needs school, whom have experience working with TBI and blindness will come in 4 afternoons a week and help Nat to keep going in her recovery. I interview them on Tuesday.

We went to Nat’s Nueropsychologist today to continue to chart Nat’s cognitive progress. Nat has begun to have executive thought. She is beginning to know the steps to accomplish something and actually execute these steps. She asks me where she is all of the time. Just yesterday she asked her speech therapists why she was so tired and that she was sorry she was tired. Bingo compassion. Part of the damaged frontal lobe issues.

In about a week she should get her new eyes. I am going to have to take them in and out. I thought I was going to throw up when they told me this. I remember seeing her present eyes the first time and feeling the same way. So I guess I will just have to get used to it.

Nat, Tom and I are headed to Columbia this week end to get Lu settled. She is living in her first apartment. We thought the trial 100 mile trip would help her adjust slowly to travel. We may even stay in a hotel overnight to see how she does.

Derek gets home next week after his first and I am sure not his last trip to Europe. His favorite spot has been Innsbrook, Austria. He was taken with mass at Notre Dame in Paris and then the sunset at Momarte. He is in London now.

Max loves his internship. Last summer he worked with retail and this summer he is working with the industrial side of commercial real estate. He is learning so much. He wears a suit to work and meets friends for a cocktail after work. He’s happy.

Thanks for hanging with me during my sickness. I am sorry I haven’t had a chance to update. We are grateful to have such loyal friends and family.

Love to all,
Nancy

Friday, May 30th

Dear Friends:
I am going to write a short note because I am laid up in bed, sick. I have that head congestion cold. Anyway, Natalie id doing great. She went with Laura to the Royals game. She loves going. She was the first person to respond when Tom asked who wants to go to the game. She wears earphones from the radio to get a better description of what’s happening.

She also went to the Occularists and wore her eyes for about 4 hours. She tolerated them fine so they are going to finish painting them. They will increase in volume as Natalie learns to use her eyelids again.

Today we went to the government Dr. to verify she is blind for her blind pension.

Tomorrow she goes back to the dentist to get her bottom crown seeded. These won’t be permanent until we have time to see if the crowned teeth are going to survive. This could take a couple of years.

So I am going to lay back down and rest. It is too bad we can’t recycle what is coming out of my nose and chest to fuel. I have plenty of it.

Love to all,
Nancy

Tuesday May 27th

Dear Everyone:

We had a great Memorial Day Weekend. Laura went to Chicago with some friends to see Kanye West. Derek is in Florence on his way to Nice. He writes that he is having a blast and wants to live in Europe. Both were missed this weekend but we four made the best of it.

Natalie was busy this weekend. It started with a pedicure on Saturday. We went together. She got French tips which were hard to do with her curled toes. We stopped by her friend Cary’s on the way home and they visited while she sat in the car. We came home and she listened to a Sandra Brown book with plenty of gossip and dirty words. That night she went with brother, Max to his friends Mikey and Ryan’s house to watch the play off games. She stayed out until midnight which was late for her.

Yesterday Tom had to work so I had her all day. Once again her brother Max decided he was going to take her out on Tom’s boat he keeps at a lake about 20 minutes away. He, Mikey and Ryan promised me they would be careful. They got her on the boat like she was a champ. She did not get sea sick. I arrived about an hour and a half later as planned and went out on the boat with her and the boys. She loved it. They went fast, slow and over wakes and in some circles. She loved it and did not get sick. It was a great day. The epilogue to this is Max left us, Had a few girls out on the boat and drifter into shallow water. The engine would not start; they got a tow to the marina and called Tom. He simmered down before he went out there and came home after realizing the boys tried to be as careful as possible. And we had the dog…

Today Natalie and Max and I went to the indoor swimming pool again. We only stayed for about one hour but it got her some exercise. The water was freezing. Natalie also sight walked with me to the top of our street and back. This is where you hold onto the other person’s elbow like you are holding onto a cup. Natalie then just has me guide as she does all of the walking. Nat slept in this morning and played with the buttons on her hospital bed. Tom served her breakfast in bed.

This week is the Doctor’s visit week. We start with the Occularist on Wednesday. She will where the prosthetics to rehab to see how she tolerates them. They want to be careful not to scratch the eye that is there for fear of infection. They then will start to paint them. Nat wanted to change the color of her eyes but every legal document says she has brown eyes. Thursday we go to the Medicaid assigned doctor to verify her blindness. I guess there is a lot of fraud happening therefore they have to visually see the reason for Medicaid. On Friday we go to the dentist to have her lower bridge put in. So I will be at the doctors all week.

We look forward to the upcoming company and would love to hear from all of you. I am so thankful that I did not have to visit a grave site this Memorial Day weekend and put flowers on that grave. I feel so lucky to have her.

Love to all and Vaya Con Dios,

Nancy

Thursday May 22nd (2nd Post)

Dear Everyone:

The family meeting on Tuesday was better this time. They are going to get her out to the local 7-11 or grocery store to see how she does with money. PT is working with her to get her ready for the impending botox. This has been held up because of Medicaid Pending status. We were approved on Monday. Thank you God!! Now they have scheduled her series of shots for a week from Memorial Day. They are training her to have her brain tell her legs to walk. All of this is to prepare her to walk.

They also sounded like they may keep her for an extra couple of weeks. They feel she has taken a jump about 2 weeks ago with her speech and her motor skills.

In OT they are working on keeping her visual memory aware. They are reminding her that she knows how to use a key board and her phone. Just to picture them. They also are giving her a marker to help her not write on top of their previous sentence. I guess this is one of blind people’s fears about writing. We may want to work at a campaign office stuffing envelopes so we practiced collating and putting the papers in envelopes.

The best time to get a handle on her progress is to watch her during lunch. She loves to be social. She has a couple of people who like to tease her and she gives it right back.

One of her highlights has been David Cook winning. It has given Natalie things to talk about the whole time at rehab. She has worn her t-shirt for weeks.. She was pumped to be able to go into rehab a winner today.

We are still working on getting her some structured plans to fill the lag time between rehab and Alpha Pointe. I have begun to look at exercise and maybe an art class. Natalie is open for everything as long as it is social.

The most beautiful thing to watch this week has been the love between siblings. Max takes her to school. He puts her to bed and I think he can’t keep his hands off of her. I think it affected him much more than I realize. We all seem to want to touch her to feel she is alive. Laura has helped her dress. She helps her groom. Them being here has helped me so much.

Tom has to work all weekend. Laura is going to Chicago and Derek is in Florence, Italy. That leaves Max, Nat and me. I love having my big family. My mother used to tell me with all of my children I will never feel alone. She was so wise.

Love to all and Vaya con Dios!!!
Nancy

Thursday May 22nd

Natalie continues to fine tune the things she learned at KU in Rehab. Her talking, walking, eating, eliminating, etc. just gets easier and easier. Thank God. This can mean such a better quality of life. She works hard at getting better and wants more and more. Her true character has sprung forth and in some ways made her a better person.

We did some great things these last few days. We went to all of her doctors including Dr. Kyrilo, her neuro psychologist, as we have done before. She charts Natalie’s cognitive skills and reflex times to measure improvement. She has some this informally but in July they will test her to see where she is cognitively and use that test as her baseline for increased abilities. The people at the Rehab Institute have begun to see improvement. They say this started about 2 weeks ago.

Natalie had a busy weekend. After saying goodbye to Derek at the airport on Friday, Max went over to Columbia to celebrate his friends graduating from Missouri. We had a quiet Friday night. Saturday am we went to Sam’s We were shopping right along and Natalie got sick. She and I were both trying to catch it in our hands. The people at Sam’s were great but we kept hearing on the radio, “Vomit on aisle 13.” Great it was us!! She recovered and sampled everything she could find. Tom was of course across Sam’s when she got sick.

Saturday afternoon we went to Centennial Pool, where Natalie swam for the KC Blazers and High School, to try getting back in the water. We had to find a bathing suit that she could wear and get on. These tank suits are extremely tight. When we arrived her face lit up. She recognized the smell of the chlorine. We went to the side wit the stairs to walk into the pool. She hopped right out of her chair, held tightly on to the rails and walked into the pool. She had a bright smile on her face. Dr. Jelly was in the pool with her along with Tom and me. She loved it. She first used a noodle under her arms to stabilize her and then some floating dumbbells to help her keep her balance. Pretty soon she ditched the noodle and just balanced herself with these dumbbells. It was remarkable. Her ability to move on her own, balance on her own and feel the freedom was overwhelming for me. I of course lost it. We stayed for 2 hours.

On Sunday we planned to go to Pooches on the Parkway and event where you bring your dog. Rachel and Hannah, the people who have been keeping Maximous, were going to meet Nat, Maximous and me there to help us get around. Poor Hannah. She was being dragged around the area. We no sooner had passed the pooper scooper things they had for sale when Maximous decided to poop. It was not your common Poop. He must have eaten some thing wrong because it was not solid. Anyway I had to pick it up. Anyway we rounded the corner; Maximous got off his leash and decided to hump this Siberian husky. They wrestled with each other. I had to jump in and put myself in harms way to control Maximous. We finally calmed them down. We waited just 2 minutes and they were back at it again. The SPCA came over and asked us to leave. We were only at the event for 30 minutes. Natalie and I laughed about it the whole way home.

Today, Monday, I spent the day down at the rehab center observing Natalie and their ways of training her. I felt this was important because tomorrow we have a family meeting and I want to be prepared. Natalie walked but doesn’t know it by just allowing me to sight guide her. This is where she stands when she is ready, grabs my elbow like she is holding a cup, and allows my tendons and muscles in my elbow to guide her through a crowd. She thinks I am helping her and she is really doing this by herself. I saw many more remarkable things. I am so impressed with the care she is receiving.

It is getting late. Laura and Max just came in from playing tennis. It so great to have a full house again!

Love to all and Vaya Con Dios,
Nancy

Thursday, May 15

Dear Everyone:

I feel so lucky to have so many who care about our well being. Thanks!!

Nat has had a good 3-4 days. She has gone to therapy and really likes the social part of “school.” Yesterday we had doctor day. We started out at the Obgyn. I just think Cindy Caputo is one of the coolest people I know. I felt some one needed to look inside her and make sure all was in place. Everything is there. As I told Cindy what had transpired, Natalie began to cry. I know it still frightens her. I also know she needs to grieve her past life. And of course once she started all of us opened up.

Then we came home to search for my purse. I love having my children home; however the adjustment always amazes me. I guess I am just an old fart stuck in my ways. I had such disorder in my house that I can’t find anything. And those of you who know me, I am a scattered brained person.

On Monday night Nat and I went to the Civic Club meeting. Everyone had to tell a little about ourselves and when they came to Natalie she said who she was, what had happened to her and that she was recovering. Deanna had some stairs that were hard to negotiate but we women handled it. We got her in and out. I am now president of the organization.

We also got to see Nat’s ENT man she has had since her ear surgeries, Dr, Thedinger, yesterday. They checked her hearing and they were amazed how well she can hear. We did some testing and found her hearing had improved in her right ear now she only had 5% loss. Her left ear has 20% loss and could use a hearing aid but we don’t find it necessary. He also cleared her to get in the pool. We need to take care of the left ear with ear plugs, So I called Dr. Jelly and she is scheduled for the pool this weekend. Dr Jelly is a retired orthopedist who volunteers at the rehab center. He gets great satisfaction from the patients he works with. Another wonderful coincidence is he lives here in Blue Springs and teaches out of the pool Natalie swam in for 6 years. Anyway I will let you know how it goes.

Having the boys home has made all of us better. They are such giving boys. They help transfer her. They get things for her before she asks. They were a little shy to help with her because of the boy/girl thing but they got over that right away. Max helped Natalie shower and Derek has helped get her out of the car. They have certainly picked up a glove and are ready to play on the team.

Max got an offer to intern with Colliers here in KC this summer. He felt he needed to be close to home to help with Nat. He has one more semester of school. Derek leaves for Europe tomorrow to start his business seminar. He has been studying his assigned company to present to the group. He gets home 6/12 and starts work with the school computers the 13th. He will work full time until Callaway. This is his second year to reformat computers for the school district.

Laura called stressed about finals. She has taken an Italian Cinema class and feels she is lost. I’m sure she is fine. She is staying in Columbia this summer to work and go to school. Laura likes going to school year round. She takes her harder classes in the summer when she can concentrate more. She is also working for the School of Arts and Sciences enrolling incoming freshmen. She was one of ten chosen from over 200 applicants to be hired.

Well the battery is getting low…

Love to all,
Nancy

Monday, May 12th

I have had an extremely busy week. We have made a conscience effort to not let Natalie become a recluse.

Aunt Jo and Jean came this week. They arrived on Tuesday with great enthusiasm. Their most memorable event while they were here was probably going to the Nelson Art Galleries. We spent Thursday afternoon eating lunch and then visiting the Asian part of the museum. They are so wonderful to go to the museums with because they know most of the myths and bible stories that the paintings are trying to depict. We had great feasts while they were here. Tom enjoyed fixing food for them. You know that is how he tells you he loves you. We felt much loved.

Our climax of the week was when we went to the David Cook (American Idol) stuff that was celebrated here in Blue Springs, his home town. I want to thank all of the wonderful people who made it happen for Natalie. I was concerned that she would be afraid in the crowd of 10,000. Jean says I drove like a maniac to get to the entrance before they let others in. Handicapped were allowed to enter early. They had given out 10,000 tickets and people were clamoring for more. Anyway we got through the gates early. It was kind of peaceful as they were getting ready for him to come. Natalie felt very comfortable and calm. Then they opened the gates. Floods of people ran to get their seats. It felt like a heard of elephants. Then the radio station helicopters flew over and all of this began to frighten Natalie. So I stood with her and gave her a blow by blow so she was not afraid. We had a blast.

Natalie is progressing. She is almost walking. She can pull herself up and get her balance. She is just afraid to move by herself. They plan to do the botox as soon as Medicaid kicks in. After the David Cook concert she came home, grabbed the phone, and dialed her buddies. She could gauge the numbers by moving from the raised number 5. They have been practicing this at rehab. The other great news is she is initiating conversations. She has begun to ask questions and state her opinions on things. This is a huge break through.

Also while Jean and Aunt Jo were here we ate at the hotel. Natalie pulled herself up to the table and ordered herself a pepperoni pizza and a sprite. Several people came out of the kitchen to say hello and other people who served with her to greet her as well.

While jean was here she went with me to the ocularists. Natalie had no problems having her eyes examined. Jean was real good to help the guy eyeball where the pupils should go. This process will take several weeks and she will have to practice wearing them. They want to make sure the prosthesis will not rub the cornea that is in the eye that is still there.

As the semester comes to an end, home come my kids. Max got home late Friday and Derek got home today. They both are so grown up. Derek leaves for Europe Friday. He comes back home the 12th of June. I plan on having the most beautiful garden, travel to the lake, play a lot of tennis, and go to Callaway in August. We also hope to have lots of guests this summer.

On this mother’s day I feel extra blessed to have ALL of my children. I remember saying to Becka around the 14th of December that I was a mother of four children not three. I am so lucky to have all four. God bless you all and have a great mother’s day.

Love, Nancy/mother .

Friday, May 9th

Dear Everybody,

Natalie had a break through yesterday! Natalie asked several questions yesterday. She asked her mom, “Who is downstairs?” “What is that noise?” and “Is it raining?” She is thinking and speaking in sentences instead of those short yes and no statements. This is huge because it means Natalie is engaging with her environment. Also, Tom has been asking Natalie to spell words. She can spell almost anything. She seems to spell phonetically. For example, she spelled Valerie V-a-l-e-r-y. Now that’s some pretty good thinking going on there! Natalie, Nancy, Aunt Jo and Jean went to the hotel for dinner with Tom last night. Natalie did very well. She told the waitress she wanted a Sprite and a pepperoni pizza. Later, Natalie said hello to her old friends at the restaurant. Natalie is very excited about going to see David Cook today.

Monday, May 5th

It is Monday Cinco de Mayo. I can remember so many past 5/5 but today I went to Taco Bell. My life has changed.

Nat got her front top teeth fixed this weekend. There are new photos of her on the photo page. We are starting to see her smile come back. She has to get her bottom ones in a few weeks.

Natalie went to a friend’s house and actually went in, sat on her couch, and visited for a while. Another first. Thanks Cary and Mike.

Natalie traveled to Sonic with Lindsay on Sunday. This was the first time she has ridden in a car other than with her family. Lindsay was nervous.

We go to the Ocularist on Wednesday. Hopefully Aunt Jo and Jean will help me think this through. They will be here tomorrow at 3:15. I have been busting my bottom in the garden to live up to my reputation.

It is late. Once again I am the only one awake. Love to all and Vaya Con Dios,!!!

Nancy aka Mom

05/03/08

Just some random stuff we have done....

Natalie had a pedicure with her dad the other Saturday. She loved it. They went to US Nails which is owned by this lovely Vietnamese family that we have known for years. Natalie was their first customer they ever had. Poor Amy, she could hardly keep from crying when she saw Nat. They had to charge extra to cut Tom’s nails because they are so thick. They have decided that this will be a monthly outing for both.

Afterwards we went to see our friends at Sizzlnsun. Nat was in their daughter’s wedding. Nat decided to tan. You know you have to be naked to do this. I tried not to panic if I had to call for help. To get in one of those tanning beds is easy but to get out…mission accomplished.

We try to keep Natalie from being bored. Tom as always has his kids do chores. So Nat folded towels and helped us spread mulch. She tries to do the dishes and can fold tshirts.

A couple of changes…Nat drinks milk now. She is not as emotional as she has been. She is different but still the same.

Nat likes to rest when she gets home from Rehab. She crawls in bed and either listens to the ocean on cd or The DaVinci Code. It is a little complicated but she loves it.

I will finish this update with a special night I had last night. I have been under the weather and have not felt like I can help Natalie. With my wonderful Tom I did not have to worry about things. Tom however read my distress and had Natalie crawl in bed and sleep with me last night. I loved it. Knowing that her body is still so full of life and warm and loving…Wow!!!

Next week David Cook from American Idol will be in Blue Springs, his home town. Nat, Aunt Jo, Jean and I are going to the parade. Look for us on TV.

Love to all and Vaya Con Dios,
Nancy aka mother aka bodybuilder aka happy

05/01/08

I have taken over the chore of writing to keep all of you updated. Thanks so much for caring. I am going to finish this part and do it from now on. Liz has 5 children, one graduating from college and all the extra May stuff on her plate. She has also come to the rescue of both Cynthia and I this spring. It is time for her to work on her on family. So here goes…

Everybody,

So sorry not to have gotten out an email last week. I was way to busy, and still am!!! Better to be to busy than the alternatives.

Natalie CUT HER HAIR and she looks like Mamma (Grandmama). The cut was at least 8” which should qualify for “locks of love”. Nancy is carrying the locks around in her purse not yet willing to pass the locks on.

Natalie met with her neurosurgeon recently and without prompting shared that she had been to a baseball game and several other things....

Natalie went to the Royals game with Tom. They sat in the handicapped section, ate a footlong hotdog and Tom had earphones and a radio for Natalie so she could hear the play-by-play. Natalie LOVED it.

She also went to the boat dock with Derek and Tom to check on the boat. She hopes next time to get on the boat.

They all went to the YMCA to check out the pool which is warmer and has a disabled entry point. At some point they hope Natalie will be able to do “Aqua Therapy”.

Natalie’s brace for her foot has been modified and improved to help flatten out her toes more. She will be getting another “botox” treatment soon. She has been walking a lot. This means she prefers walking to riding in the wheel chair. From the car to school. Into the store. Etc.... When she does ride in her chair she is preferring to direct herself.

Nancy, Tom and Natalie had their “Family Meeting” with the team. They talked about Natalie’s progress as well as those things they wanted more improvement on. The meeting sort of lays out in black and white the hard road ahead and Nancy found se was pretty depressed the next day. The therapist told her that was normal but to focus on all that Natalie had accomplished.

One day Natalie was crying. Nancy asked her what was the matter and she said “I can’t see. I can’t walk....” Nancy asked Natalie if she wanted he to cry with her. Natalie said I sure do”. So they both cried and had a pity party and then they decided that was enough.

Some of the things Natalie has been doing the last week or so:

Made a necklace with colored beads. This activity helped her follow directions and remember where each colored bead pile was. When asked if she liked her necklace she said a definite NO. It was a choker and after the trach and neck brace she is not keen to have anything around her neck.

Arranged flowers - activity encourages following instructions ....

Made cookies and brownies in OT which she takes home to Nancy and Tom.

Set the table for Tom. There is a place for everything and order which helps Natalie get along without her sight.

Natalie has also begun to cook at school. They teach her to use a measuring cup with a knife to smoothe off the top to get an accurate measurement. She has a little trouble with the liquids. She get no egg shells in her cooking mixes. We of course love it because she brings home the leftovers.

Natalie’s typicall day starts with me getting up before her and getting dressed. Then at the last minute I wake up Nat. We potty her and then I try to get her to help me pick out what she wants to where. I give her just a little nausea medicine for the morning. I get her dressed, pack he breakfast, and her meds. We get out to the car. She can wiggle her way on to the seat but still needs help with that last balance to stand on her own. We get in the car with a change of clothes, a throw up bucket and lots of towels. The good news is we haven’t had to use this but we did have a relapse for a week or so. Whatever we do we don’t change lanes. I have never been more aware of the potholes and bumps until now.

We arrive at the day hospital part of rehab. They take her blood pressure and pulse. Her numbers of the blood pressure are closer together than most. They say this is due to her TBI.

Then she starts with Shalon. She helps with anything to do with communication and the mouth. She calls Nat girlfriend and helps her fix her hair.

Then she is with Brenden. They stretch her arm and shoulder. OT works with everything above the waist. Brenden specializes in Blind/TBI so she helps her cook and make crafts.

She sees Shannon next who works with everything below the waist. This includes walking.

Natalie spends an hour in the leg stretching machine and uses her Ipod. It’s dad’s so it has old rock and roll instead of rap,etc.

Natalie also goes to exercise class. Here they walk in circles with their walkers, pedal on their arm pedals and lift weights on the machines. Don’t worry, she is getting her guns back.

I am going to stop this update and see where Liz was on the other ones.

I feel that I may be one of the luckiest people in the world to have you all care.

God speed,
Nancy aka mother

Tuesday, April 23rd

It is late at night, Natalie is asleep and Tom is snoring on the couch. My other kids are safe at their various colleges finishing up the semester. It all seems so right, except when I wake up at night sad. I feel so sorry for Natalie. I looked at the most beautiful moon tonight and Natalie will never see the moon again. It tugs at my heart. We had a meeting today with the people at the Rehab Institute. They gave us their evaluations of Nat and what they were working on. The underlying tone was the brain injury is the primary problem. The vision can be addressed. The fact that she can’t see makes it hard for her to get her balance to walk and then complicate that with the spaticized toes… All of this is complicated by the brain injury…So I am going to bed. Grateful you are all there to support us. We are not so strong; we are just doing what most of you would do in our circumstances. As Scarlet O’Hara said,” Tomorrow is another day.” Sweet dreams. Love, Nancy

Thursday, April 17th

Natalie continues to relearn every day and the therapists and doctors continue to be positive and encouraging about Natalie's recovery progress.

Max was home this weekend. Max crawled in bed with Natalie and they watched movies. Later they laughed because he had selected a movie that was mostly action and hardly any dialog.... Max said it was really hard to describe the action to Natalie. But she mostly just loved having him close (he had not seen her for about six weeks). He had come home to see and love his "sissy". Nancy said it was a sibling love fest.

Natalie went to the dentist last week and was told her teeth are overall in good health. Resin and light will be used to cosmetically correct her broken teeth. The molars appear to be healthy but a complete set of X-rays will be taken to better assess this. Her dental treatment will begin one week from this Friday and will be done by Nancy's friends/family dentist as mentioned in a previous update. The dentist said the hospital dental care that resulted in Dr. Crete wiring shut Natalie's jaw really helped preserve her teeth.

Last week Natalie also visited the eye doctor. They removed the "cover" or "place holder" in the socket that has no eye so they could clean that area of lingering debris. They use what looks sort of like the old suction dart gun to remove/place these contacts. Nancy and Natalie talked about how she will have docs messing with her eyes for the rest of her life and that Natalie will have to get used to this. They had Nancy hold her while they did this procedure. It was not painful but really freaky and if we questioned Natalie's strength, that question has been answered. Nancy said she practically ripped her in two! That being said, her appointment to get her "giant contacts" from the "occularist" (eye artist) is May 7th. Aunt Jo and Jean will be there and Nancy is sure they will watch over this process and make sure Natalie gets the best.

Laura came home on Sunday and stayed till Monday afternoon when she had to leave for class. Laura is really good to come home often.

After the weekend, Natalie meets with "group" at the school and they share what they did over the weekend. Natalie told them she had been to Great Wolf Lodge (indoor water park) and to the lake. Nancy asked why she told this when it was not true. She said it was more fun to tell than the truth.

Monday night Nancy hosted a membership drive for her Blue Springs service club. Tom was the show. He showed the ladies, with Natalie at his side, how to make an "appletini", "cosmopolitan", "dirty martini" and "chocolate martini". Natalie was not interested in having one but was happy to have a "orange soda cocktail". Lindsey and Ashley came to the party to hang with Natalie. I asked Nancy how it was to have this type event in the face of Natalie's situation. She admitted it was sort of weird. Nancy asked Natalie if Tom was tipsy from the Martinis. Natalie said "he was and she watched him" and then she laughed.

Tom and Natalie also have been teasing that Natalie is going to make the Calendar for "Bikini Blind People". Nancy says the "angry Natalie" has faded and even though that person could be tough, she misses the old Natalie. But she also has a protective and big hugs love for this woman who is fighting and has a sense of humor and who grows every day. For such a long time Natalie lashed out at her father and her mother. Before Natalie's accident when she moved to Texas to pull her life together, Tom told Natalie he "believed" in her. And he did so many little things to encourage her along. Though Nancy held Natalie's hand for days through this hard time, it was Tom's "believing in her" that pushed her forward. From that time they formed a special bond. Nancy says Natalie responds to Tom more than anyone. And Nancy seems so heart warmed by this relationship. After Natalie's accident, Tom added a new item to his menus, "Salad Natalie". It is a wedge of lettuce with Green Goddess Dressing, Parmesan Cheese, Flash Fried Proscuitto, and Pine Nuts. This was served at the "Lee Woodward Dinner".

Lee had several pictures taken of her with Natalie, Tom and Nancy. She and Nancy talked about "swimming through jello". Raising twins (they both have twins). Prayers and family - how this gets you through. And they talked of "hope". Lee asked Natalie how she was and Natalie responded "Pretty damn good".

Love,
Liz, FA

PS. Natalie has not been nauseous the last 6 drives to/from school. Yea!!

Wed, 16 Apr 2008 12:06 pm

I spoke with Nancy this morning so she could recap their evening last night. Here's what I remember...

Nancy said it was "pretty cool".

Nancy, Tom and Natalie had a nice table in the back of the room - about 1000 were in attendance.
Their meals were paid for by The Ethics organization that was hosting the event and the same organization had flowers for Natalie at her table.
They did not have to exit quickly, but worried once when Natalie started to gag on some lettuce. Tom and Nancy looked at one another...worried...but it passed.
At the end of the big-whig's intro speech the ("small like Rebeckah") woman told the audience that she'd been informed that the Food & Beverage director's daughter had recently suffered from a traumatic brain injury and that Natalie Schneider and her family were their special guests here tonight.
Many, many, many top Ethics folks and top Marriott folks (including Tom's boss) came by their table to greet Natalie personally and wish her well. For the most part she said, "Why, thank you!" Nancy said she forgot only once or twice. She was very aware of what was going on and seemed pleased with all the attention.
After the program, Lee Woodruff, came to their table and sat to talk and visit with Nancy, Tom, and Natalie for about 10 minutes. Mostly she and Nancy discussed the difficulties and hardships connected to caring for someone with this sort of injury. Nancy told her that her sister in Boone had read the book (In and Instant) just after Natalie's accident and passed it along to her...that there were all sorts of places underlined and that we felt like Lee and Bob were speaking directly to us through their book. Nancy mentioned Lee's analogy of "moving through jello" in her book and she could so relate!

So that's the story. Nancy may want to add more or correct me, but it was a great time for all - especially Natalie!

BTW - Nancy sounded so happy this morning. She says that she really is pleased with the Rehab facility in Kansas City and that Natalie has even mentioned a "cute boy" there. She also has a great social worker who is tapping into all sorts of aid for them. Nancy also remarked that Natalie's anger seems to have gone away after the accident, that the anger was hard on Natalie, and now she just seems so happy to be alive.

Nancy is settling into a routine and building up muscles caring for Nat (says she hits the tennis ball so hard from that strength). She has resigned herself to no traveling for at least a year and plans to put that effort into yard work - creating beautiful gardens that appeal to all the senses - smell, touch... The only travel plans they have is to come to Callaway Gardens. Obviously we don't know how far Natalie will have progressed by that time, but Grandad has already eye-balled the facilities for handicapped access and he says that Natalie's cousins will literally carry her around everywhere anyway so she need not worry!

Thank the Lord, the lucky stars, Karma, Mamma...whoever you can...a good day for the Schneider Family!

I had to share....

Becka

Tuesday, April 15, 2008 3:46 PM

Several weeks ago I sent Nancy the copy of In An Instant the book about and written by Bob Woodruff and his wife, Lee.

I was so moved - especially having been through the Natalie crisis, that I emailed the Woodruffs after searching around on their website.

Bob Woodruff Family Fund for Traumatic Brain Injury
... In An Instant is written by two very distinct voices -- Bob and Lee Woodruff: ... Meet Bob Woodruff. In An Instant. News & Events. FAQ. You Can Help ...
www.bobwoodrufffamilyfund.org/in_an_instant.shtml - 15k - Cached

Of course I expected nothing to come of it and likely it didn't, but nevertheless....

Nancy called to share:

A friend of Nancy's heard that the Woodruffs were expected in town (Kansas City) for an event about bio-ethics or something and she invited Nancy to go with her to attend the event.

Nancy accepted and then learned that the event was to be at Tom's hotel (Hotel Tom, The Mulebach).

Nancy then learned that one of Tom's employees is in charge of the food and beverage for this event and that person had mentioned Natalie to her contacts while coordinating things.

Nancy then got an email (?) from Lee Woodruff asking her to join them at the event and to please sit at their table as their guests.

As it turns out, the Schneiders have a spot to sit in the back - in case Natalie needs a quick exit for any reason, but she is likely to hob nob with Lee and Bob Woodruff this evening.

Be thinking about Nancy and Tom and Natalie and wish them well....!

Becka

Monday April 7th

Dear all,

Natalie had a "get to know you" week at KC Rehab which Tom refers to as "school". She has the same therapists everyday so she can get to know them and build a working rapor with each of them. Nancy hopes to get a "plan of action and goals" from Dr Ladesach this week or certainly by this time next week. She had expected this already.

Nat worked on mobility this week. She can walk with the aid of just one person now instead of two. She also has been "tracking" her space. This is where she runs her hand along a wall as she walks by it so she can get a feel for distance and relate that distance to her steps. A "feel" for the size of the space she is occupying. It is rather conceptual. Where counting steps is more an application.

Nat also worked on getting in and out of a car. They actually have a car at the rehab center. It is the body of a car (sedan type) but has neither a front end or a rear end. This way it takes up less space in the room but is a real vehicle that the patients can get in/out of. When Tom reached out to help Nat get out of the car after arriving home on Friday, she pushed his arms away. She wanted to show Tom that she could do it on her own. She can feel, lift and push herself up. This is also true of Nat getting in and out of bed. All these things we take for granted as we do them without even thinking. Remember our children when they were young and could do for their "self" and how proud they were and we were of them. Yea Natalie!

Tom had Natalie on his own most of the weekend. They had a light dinner and both went to bed early Friday night, hardly dark when Tom laid down. Tom or Nancy have to wake in the night to assist Natalie.

Tom tilled his garden Saturday morning where he grows shallots, broccoli and onions among other things. While he worked nat sat in the sun and even got a little sunburn. But the folks at school commented on her color this morning saying how good and healthy she looked.

Laura and Nancy returned home from "Mom's weekend" at Mizzou and Tom made them all tenderloin.... They watched the historical basket ball game of Kansas beating University of North Carolina (tonight they are watching the national championship between Kansas and Memphis).

Laura returned to school. Nat began listening to another book, this one about a dog - Marlee and Me.

Tom had a big review at work today to see how he had internalized or utilized the feedback he got from a review just 30 days ago. What is it that they say on American Idol..."Tom, you are safe". But we all know Tom is the best...

This weekend Nat was reaching for something and Nancy asked her "What do you want." Nat said "my drink". Seems a simple enough conversation... however, one usually gives Nat a bunch of answers to choose from. Nat this time formed and stated an independent thought. These are milestones on the TBI recovery path.

Speaking of American Idol. Nat has a t-shirt that says "I love David Cook".

Natalie is battling nausea on a regular basis. Tom thinks it is motion sickness. Natalie even gets sick after being wheeled in her chair from the rehab building to the car. Nancy thinks maybe Nat is "fixing" on this and they may be able to distract her. They have a prescription for Dramamine been avoif=ding it because it makes her sleepy and they want her to be ready to work when she gets to "school".

They do not give Natalie morning meds until she gets to rehab because she will likely throw them up on the way. So she has some pain in the morning. PT and OT have been working on her shoulder mobility. The foot pain has been reduced now to her toes. She squeezes her toes in and down to the ground and this seems to negatively effect her balance.

This morning Nancy was getting her dressed and the pain and difficulty of getting ready were a bit hard. Nat and Nancy were both frustrated. Nancy told Natalie it was fine to to express herself. She encouraged her to get mad and vocalize. "Being blind sucks!" They both agreed and then they finished dressing and off to school they went.

Later Natalie made a joke. You have all heard the the line "s... or get off the pot". Natalie was in the bathroom and she said "S... or go blind." A "Blind Joke". Baby steps! Walk with one aid, say what you want, vocalize your feelings, tell a joke... and live the next moment, one at a time with those you love. Nancy promised Natalie today while they were struggling with arm holes in the darkness of blindness that she and Tom will always be there with her and for her.

Love,
Liz, FA

Tuesday April 1

Dear All,

Huge news! Dr. Collins and his wife, the Schneider's dentist and good friends, have volunteered to fix Natalie's teeth. The kindness and generosity from friends and family... WOW. Thank you!

Natalie's first day of rehab was a series of assessments by the ST, PT, and OT. Today they were to give Nancy a report and a plan of action. This was to be determined in a meeting of the various therapists and Dr. Ladesech from KU.

Nancy met the OT.Blind rehab specialist she described her as gray haired, sort of marmy but gentle and intelligent looking. She had Natalie feel shapes and coins. She did several other tactile activities. This woman has over 20 years experience with blind TBI rehab so we are very excited to have her on Natalie's case. Nancy will meet with team leader today or tomorrow.

Nancy said she was surprised to have gotten Natalie back home and in the house by herself as easily as she did. She said they had a great weekend with Natalie and tat her being home has Natalie talking more (though still not initiating much). Lindsey sat on the deck with Nat while Tom worked in the yard. Natalie sat in the kitchen while Tom cooked home made chicken noodle soup,

The dog came to play. Lindsey, Megan, the Marriott Chef and his family all came to visit over the weekend. Natalie seems more tuned to her surroundings since she got home. Listening to the birds in mating season. More smells of Tom cooking, sunshine and breezes on the deck. Nancy sounded so happy. A brief reprieve from the work ahead.

The other thing Nat did over the weekend was to listen to the book on tape Aunt Sarah recommended. A Danielle Steele story about a blind woman with a happy ending. Natalie loved it!! The paperwork for Natalie to get free CD's delivered in a library system for the blind is still being processed by KU Med. But when asked if she wanted to do this, that or listen to the book... she wanted to hear more of the book. Thanks Sarah.

Nancy said they were going to have her ears tested and Nat fitted for a hearing aid due to her past ear issues. But Dr. Ladesech said she did not need one, her hearing seems good. Nancy says her ears have compensated and adapted and that she has "telescopic" hearing.

More later. Sorry to be late.

Love,
Liz, FA

Friday March 28

Dear All,

After the pics, tha cake, the goodbyes and hauling all Natalie's stuff to the cars.... they got natalie to the car and then Nancy could not find her keys. She retraced her footsteps (like all good mothers) while Natalie was eating hamburgers because after all that getting ready to go she was hungry. Finally, Tom found the keys. Guess where. In his pocket (dejavu anyone).

So now they were off. But eating before the drive home is not a good combination for Natlie. She was in Tom's car....

They got home and pretty much had a quick dinner - the hamburger earlier was a snack and it was gone now anyway. They got Natalie ready to bed and off to sleep they all went. Do any of you remember getting up in the night with your baby who could not sleep or who needed to be changed or .... Natalie is like a really big baby.

After a restless night they finally got Natalie out of her bed early this morning and put her up in the bed with Nancy - anyone remember doing that with your babies, toddlers, even older kids.... The Schneiders love to cuddle and hang together, and just lay around and chat. Nancy crawled up in Sarah Ellens's bed when she was there.

Eventually they got Natalie up and to the table. Nancy gave her a Dannon Smoothie which has helped with her being sick in the mornings but on this day it did not work and she threw it all up and Nancy was cleaning up the 2nd or 3rd mess of the last 12 hours.

Natalie then rested on the couch for a while. They had a few "toilet transfers" as Nancy refers to them. But mainly Natalie just rested. Then Nancy served her a luch of grill cheese, fruit and jambalaya. Apparantly Natalie has a stronger constitution in the afternoons. Nancy rubbed Natalie's feet like Cynthia Lyn showed her how to do.

Nancy found that KU Med had not sent all the meds home the were needed so faxes were sent to pharmacys and I guess delivered to Nancy.

Natalie's meds include: GasX, Senokote, Tylenol (acetaminophen), Oxycodone (5mg as needed), Celexa (anti-depressant), an Anti-inflammatory, and Ritalin 2x/day.

After lunch Rachel (friend who has been keeping Maximous), Rhona and Hannah came to visit. Then Ray (Rachel's huisband and Nancy's handyman) came with Maximous. Natalie literally went from a laying position to swinging her feet to the floor, pivoting and moved herself to a sitting position. This is the first Nancy has seen her do this kind of complex motion. Natalie smiled and it showed how happy she was to have her dog with her. Natalie played with Maximous all afternoon for 3-4 hours through dinner (mini cheeseburgers and fruit - Tom come to my house:) Ray took Maximus home so Natalie could get ready for bed.

First shower! Nancy said it was not as hard as she thought it would be. They put Natalie in the shower dressed and then disrobed her in the shower. Nancy got in the shower with Nat in her bathing suit! They had Natalie in a plastic lawn chair and used a hand helf shower. Nancy said it was easier than she thought it was going to be. They wrapped her in lots of towels when she was done. Dressed her and got her in bed with an ambien with a prayer that she would sleep better tonight.

Tom's closing thought for the day "Not Easy!!' and he was there only part of the day. Nancy's thought ... NOT EASY!!!" and she was there ALL day.

Nancy says she can hardly stand because her back hurts so bad. And where she lost some weight while Nat was in the hospital she may loose more now because she "hardly has time to eat" and it is a physical workout.

I asked Nancy about that walk in the wheelchair around the neighborhood that she had planned. "Thank God it was overcast and raining, the weather report said "a good day to stay in and read a book"

So Nancy litaerally fell into bed a bit ago .... more on Sunday.

Love,
Aunt Liz, FA

Monday, March, 24th

NATALIE IS GOING HOME ON WEDNESDAY

Natalie will be told TODAY that she is going home and CHECKING out of KU-Med. WOW! Just over 100 days since Natalie crashed into a semi while speeding, rescued with “jaws of life” and presumed she would not live through the day… Natalie is going home. After one month in a coma, weeks of rehab therapy and 100’s of people working on her, for her and with her… NAT IS GOING HOME.

Natalie can balance herself in a standing position, she can walk the length of the rehab hallway (about 75-100 feet) behind a wheel chair with someone controlling speed of chair and another beside her to watch for falling, swallow and eat all foods – no dietary restrictions, dress herself (needs help with pants because of walk/balance), groom herself (teeth, hair, lipstick..), push herself up from a sitting position to standing, use her hands to wheel her chair forward, talk on the phone, state her mind - even emphatically, knows what she wants and how she wants it, add/subtract money and time….

Natalie has had to start her life over. Like a defibrillator restarts the heart, Natalie has restarted her brain…. Nat has had to relearn the most basic of functions – swallow. A child learns to talk, walk, potty, eat, groom, dress, play, smile… in a space of 2 years. Natalie has relearned all these things and more in a space of about 9 weeks. She is relearning all this and blind. I believe it is the love of all of you and the power of prayer that has lifted Natalie from the death to today!!

A moment of bragging on Nancy – While I was there she hugged everyone, seemed to allow mistakes, seeming lapses in communication … and I did not think she was pushing the staff hard enough. But she is ON TOP OF ALL THINGS NATALIE. Since I was there Natalie is walking with balance. This is because Nancy works with the docs, PTs, nurses, COs, and everyone. She encourages them and hugs them – and they want to do more for Nancy and Natalie. And in the face of all this she has gotten a “verbal” OK for Natalie to be on Medicaid, KC Rehab has agreed to take Nat on as a “charitable” case with 100% financing and unlimited rehab sessions (she starts this Thursday and they are holding this spot for her), a stipend for the “blind” from the government has also been added for Nat’s care (small but every $ is a blessing), Dr. Ladesich (main doc) and Dr. K (Neuropsychologist) will both continue to treat and work with Natalie. Nancy believes this constancy will be beneficial for Natalie. And NANCY gets all this in motion, keeps up with it and follows through!!!

Bragging on TOM… visits every morning and evening. He takes her treats – water, a sausage biscuit. He is able to encourage her in special ways and she wants to “do for him” and “show him” her progress. After walking the hall both PT sessions, Natalie wanted to walk it again to show Tom. He works the financial, legal and tax aspects of Nat’s care. He talks to the lawyers, accountants…. And through it all he manages over 300 employees and a$14M+ food business. And he cooks the meals – Pasta Alfredo on Saturday for Nat and Steaks for Easter. With ALL the trimmings.


LOGISTICS:
* Tom will take Natalie to KC rehab every morning to arrive by 8:30am.
* Nancy will get Natalie ready and help get her in the car.
* Tom will more than likely get Natalie fed every morning.
* Nancy will pick Natalie up at 4:30pm and get her home and in the house. Nancy is very scared of the task facing her. Just getting Natalie in the house on her own will be really big.
* Weekends Nat will be home without rehab.
* Lindsay, Megan, and Ashley – Nat’s best friends – all will be living in the neighborhood and have agreed to help and sit with Natalie some.
* Laura is great to come home pretty often on the weekends.
* Max and Derek will be working in KC this summer mostly.

KC REHAB: is also in the downtown area. They specialize in preparing patients to return to work. They have PT, OT, ST, and Technology/Computer Center. They will “assess” Nat on Thursday and Friday and then they will meet with Nancy and Tom on “Plan of Action and Goals”. The center has a specialist in “Blind/TBI” rehab therapy who will work directly and daily with Nat. She is one of 3 people in KC to have the experience and knowledge to do this job. Her name is Deborah and she has a reputation of being excellent and is praised highly by Alpha Pointe. The other two are at Alpha Pointe where Natalie may progress to.

OTHER MISCELLANEOUS INFO
* Natalie’s leg that had a calcium deposit seems to have resolved itself.
* She is having the same problem with her right shoulder and it is effecting her “range of motion”. May have to remove calcium later but doing several PT things to work through it.
* Working with 2 lb weights with her arms that Tom gave her.
* Nat wants to work MORE than PT sessions and is working on her own some (weights, walking with Tom etc…)
* Natalie understands that walking is a ticket to more independence.
* Nat spent Saturday at home and when Tom took her back that evening she cried. She is going to be so excited with the news today that SHE IS GOING HOME to stay.

GOING BACK IN TIME….

Dear all,
The last sister is taking a turn at the update.... Hope you all had a lovely Easter weekend. I was very busy from 4:10am till I fell asleep in the chair at 9:20pm. Sorry to be late on the update.

I am one of the twins. I live in Florida and have children that are close in age to Nancy's. I am at my beach/river house now and every time I come I have dreams of Natalie sitting on the dock, smelling the salt air, hearing the boats go by, and feeling the warm soft breeze through her hair almost like a healing touch.

I went to visit Natalie the last week in February. I took some photos then so I will add those to this update but please understand they are 3+ weeks old and she has come a long way since then. I never wrote my impressions of my visit so I will now and will try to be brief.

At the time of my visit Natalie was struggling with "body pain", "teeth pain" and "foot pain". You might ask how she felt and she was pretty direct and said I feel like s... She was also only 2 weeks aware of being blind so she was facing reality in a big way. BUT Natalie NEVER complained or whined.

* The first day I was there they stood her up in a contraption that held her upright but allowed for all her weight to be on her as if she were standing on her own. She winced, fidgeted, grimaced and you could tell she was in terrible pain but she never cried out. And when they set her down the relief was immense and written across her face. By the end of that week she had been given a "nerve block". It was explained to us that her brain was not sending proper signals to her limb to deal with the pain effectively enough to push through it. For example, when you get a “charlie horse” you move your foot or calf to relieve the pain. Natalie could not make this connection. The nerve block will wear off eventually like an epidural but much longer lasting and the hope is that Natalie will be able to mentally deal with it then.

* The speech therapist (ST) began taking her "off floor" to discover and experience other surroundings. The ST also made a book for Natalie for everyone to write in to give the ST things to discuss with Nat and for her to get to know Nat better. (See Sarah Ellen’s notes below)

* A new Resident started a 2 month rotation on the floor and Nancy hugged him and told Nat how he was so excited about Nat and her progress that he was taking a special interest in her case and this was going to help Nat progress better and faster. His first procedure with Natalie was to relieve an infected hang nail (hand).

* Claude, the physical therapist, had a come to Jesus moment with Natalie that said to Natalie that the ST would help her, encourage her, lover her through the hard time but that Claude would not let Natalie give in. They work well together and Nat told me that "Claude pushes her" and that "her being pushed is good". It was also noted that the other PT did not push Nat as hard, even giving her prompts to take breaks. Nat said she could work harder and that she needed to work harder. Nancy talked to the head doc about this and the next week Nancy worked with the PT and Nat and that is when they started positive power of suggestions and “drink of water” suggestions. Natalie has been pushing herself ever since.

* Occupational Therapy (OT). The dynamic duo of Laura and Laura. At the end of the week I found out that it was Nancy who helped these girls get comfortable with Nat and told them to jump in and push Nat a little more. They were treating her as very fragile when they first started.

* A couple things we worked on with Nat that week was eating, setting up her eating in an organized fashion so she would know where everything was. Also having her do more and more for herself. It was this week we learned to tap her to get her to quit picking so the blemishes on her face in the pics are gone now.

In that week Natalie went from

* Pureed food to solids

* Not walking to walking 2-3 steps

* Half smile to full smile

* Off floor adventures with ST and others

* Verbal response to pain without verbal prompting


So fast forward to Sarah Ellen and Cynthia Lyn visit…….

I (Sarah Ellen) talked with the speech pathologist to learn a few things. ST has been doing this for 24 years and said that those who do amazing things and really accomplish a lot are the ones who have support like Natalie has.

ST said that Nat has some Aphasia. Nat sometimes will really react as you give her a word as if it was just the one she was looking for. This gives the speech path the idea that she is very much trying to find words for thoughts/feelings that exist.

Aphasia is a disorder that results from damage to language centers of the brain. For almost all right-handers and for about 1/2 of left-handers, damage to the left side of the brain causes aphasia. As a result, individuals who were previously able to communicate through speaking, listening, reading and writing become more limited in their ability to do so. The most common cause of aphasia is stroke, but … traumatic brain injuries, .. can also cause aphasia. For people with aphasia it is the ability to access ideas and thoughts through language - not the ideas and thoughts themselves- that is disrupted. For more info go to http://www.nidcd.nih.gov/health/voice/aphasia.asp or http://www.aphasia.org/ .

How Do You Communicate With a Person With Aphasia?
*Give the person with aphasia time to speak and do not finish the person's sentences unless asked.
*Be sensitive to background noise and turn off competing sounds such as radios or TVs where possible.
*Be open to means of communicating other than speech, eg., use drawing, gesturing.- ST using smells, sounds, touch, and trying to get Nat to “sense” things.
*Confirm that you are communicating successfully.

Since Nat has trouble accessing words, it is good to ask, wait, give a clue, wait, and then give more clues until she can get it or you have given it away. ST starts her sessions with simple questions that have yes/no answers and then increases to more open ended ones. Just like as she gets stronger through a session of walking, she gets stronger through a session of talking.

ST really tries to build Nat up and brag on her. She tries to orient her to her surroundings and give her the tools she will need to communicate. She is also walking her around and giving her many cues that allow her to know her surroundings. It empowers her and allows her to wake up more every day when she can access each new sensation. For example, she will walk her around in the cafeteria and have her smell things. She will tell her that a bump in the floor means she is entering another room or going through a door. They talk about the appropriate things to say when someone says something to you. She says it is very good for Natalie and makes her feel better if you can give her lots of information about her surroundings. Tell her who is in the room, what is going on, what time it is, etc.

. Some signs that she is improving include her increased startle reflex, her ability to detect subtle humor, and she is doing math problems! (doing math when I was there) Natalie can count and add money. She can process time, “it is 3:20 how long till 4 o’clock?” That she can compute in her head shows that she can hold several pieces of info and do something with it. It also shows a knowledge of social info with the time and money. Natalile remembers Facebook passwords, some phone numbers. She responds well to associative speech markers. When asked what state begins with an A… Nancy prompted, “Grandad lives there” and Natalie responded “Birmingham”. Nancy asked where Birmingham is and Natalie responded “Alabama”. Speech associative pathways. Little steps can be huge.

The ST also suggested Apraxia of Speech may have a number of different speech characteristics, or symptoms. One of the most notable symptoms is difficulty putting sounds and syllables together in the correct order to form words. Longer or more complex words are usually harder to say than shorter or simpler words. People with apraxia of speech also tend to make inconsistent mistakes when speaking. For example, they may say a difficult word correctly but then have trouble repeating it, or they may be able to say a particular sound one day and have trouble with the same sound the next day. People with apraxia of speech often appear to be groping for the right sound or word, and may try saying a word several times before they say it correctly. Another common characteristic of apraxia of speech is the incorrect use of "prosody" -- that is, the varying rhythms, stresses, and inflections of speech that are used to help express meaning. An example: someone may repeatedly stumble on the word "tomorrow" when asked to repeat it, but then be able to say it in a statement such as, "I'll try to say it again tomorrow." Her swallow abilities are great also because it says her speech muscles are in good shape.

The speech pathologist says that she is at 5-6 on the “Rancho Scale”. .http://www.rancho.org/patient_education/bi_cognition.pdf to better understand the Rancho Scale - a Cognitive Functioning evaluation tool used by the rehabilitation team. The eight levels describe the patterns or stages of recovery typically seen after a brain injury. This helps the team understand and focus on the person's abilities and design an appropriate treatment program. Also, her short term memory is increasing each day

Cynthia Lyn asked Natalie why she wasn’t letting her foot go straight. Nat said, “I’m just pulling their chain.” When asked her why she is pulling their chain, she said, “Cause I can.” She really had a lot of attitude today. It was cute and seemed more like Natalie. The speech path said those parts of Natalie are more of what will get her through and more of what we need to watch for- the stubbornness to make it and the stubbornness to fight us.

Team Natalie “Awake In 08” Member,
Liz, FA

 

Monday, March 17th

Sorry I am getting the update in on Natalie late. By the time Natalie back to the hospital, everyone got some supper and I talked to them it was seven at night.

My daughters Sarah Ellen and Cynthia Lyn got bumped from their flight in Birmingham which put them late getting into Kansas City and caused Nancy to make two trips to the airport. Between trips to the airport Nancy went to KU Med Center to help Tom get Natalie in the car. Transfers in and out of the car are still difficult! This was Natalie's second afternoon visit home. SE & CL arrived mid day, Nancy picked them up and they met Tom and Natalie at the house. Laura was also home for the weekend.

I talked to Cynthia Lyn last night and Sarah Ellen this morning for the update. It warms my heart to know that they are there to see about their first cousin Natalie.

CYNTHIA LYN'S OBSERVATIONS
Cynthia said Natalie looked much better than the pictures she had seen. She said that Natalie's skin looked good and her face no longer had scabs. She also said that her walking was not as good as updates had indicated. 97% of the time Natalie is in the wheelchair. When she does walk it takes a lot of energy and effort and usually there are people on each side and in back of her. She is still not putting weight on her foot and before she takes a step they have to balance her by pushing in her bottom. Of course at home there was not much oppertunity to see Natalie's ability to walk so being at the hospital will show more. Cynthia asked Natalie if she could brush her hair and Natalie turned anxiously at Nancy and told her she didn't want CL to cut her hair. Nancy reassured Nat telling her they had had this conversation before and that CL was not going to cut Nat's hair only brush it. CL brushed Natalie's hair, put make up on her, massaged her hands and gave her a manicure/pedicure. Cynthia said that when Natalie went back to the hospital later that afternoon she felt pretty. Cynthia called her family and let Natalie talk to them. Cynthia was interested when Natalie talked to her husband Robert-it was like a different demeanor and tone of speech...she said the kind of thing she said to Robert in the past..."Hey what are you doing?" Cynthia said Laura is so uplifting and encouraging to Natalie, her parents and everyone around her. Another observation of CL's is that when anyone is around Natalie there is constant interacting and it is rewarding but extremely exhausting. Even though Tom and Nancy are more use to this now, CL said she has a whole new respect for all that they are doing for Natalie.

SARAH ELLEN'S OBSERVATIONS
When Sarah Ellen first saw Natalie she said it was nice to see her in her warm loving home. Natalie was sitting in her wheelchair covered with a blanket in front of the TV. Nancy walked in first and as always cheerfully said, "Natalie look who's here!" When Sarah Ellen first knew she was going to visit Natalie she told her fifth grade class about what had happened to her cousin. She told them that it was a miracle that she had lived and now her brain was going through the process of waking up. (Sarah Ellen wore to school her NZS Awake in 08 T-Shirt.) She told them that Natalie would be blind and suggested they each bring in things they normally had "in their world" for SE to take to Natalie. Things Natalie could feel and things that would make Natalie feel better. When SE got some "one on one" time with Natalie she showed Natalie some of the gifts. There were furry socks, a seashell, a rock and even a note from a learning disabled child telling Natalie about God. Another child gave Natalie a ribbon with a cross at one end and beads at the other. Cynthia asked Natalie how many beads and after feeling each one slowly Natalie said, "six". They asked her again later and SHE REMEMBERED and she said, "six". Natalie felt each gift as Sarah Ellen described them and then SE and Nat talked about them. Natalie always politely responds but it is hard to tell how much is her thoughts and how much is suggestion and it was interesting to see Natalie's mind working as she investgated each item. When Natalie left to go back to the hospital Sarah Ellen leaned over and whispered in Natalie's ear, "Thanks for letting us come see you."

SUNDAY AFTERNOON VISIT
Natalie loved spending time at home Sunday afternoon. Besides family Natalie was excited that several of her friends came over....Mike, Keri and Megan. Maximous also came over. Cynthia says this is no normal dog....that the dog's head is as big as Cynthia's. She said this 150 pound dog jumps up on top of Natalie and Natalie loves it. Natalie smiled a lot! Tom cooked his famous Jambalaya for Natalie's homecoming and Natalie had been excited about it for days. Natalie is eating well, feeding herself and her teeth are not hurting anymore. (CL thinks the roots of the teeth may be dying) Natalie ate two plates of Jambalaya, bread, two Smoothies, pudding and Cheeseits....like I said she is eating well! Sarah Ellen said Cynthia Lyn kept disappearing and SE later learned that CL had done 18 loads of wash in the basement at the Schneiders.

LEG
The calcium deposit in Natalie's leg is virtually gone-no more pain-never got a big as they thought it would.

EYES
Laura and cousin Willis pointed out in the beginning and Nancy reiterated yesterday that it was such an advantage for Natalie to have seen in the past to help her visualize things now. She can know her colors-she can know what her house looked like. If she had been blind from birth she would have a much harder time. Cynthia said that the white sliver that people see in Natalie's left eye is her eye and though the right eye is gone the shape is maintained and later it will have a prosthesis.

SHORT TERM MEMORY
Short Term Memory is being watched and the following example shows her progress: They asked Natalie her address...having trouble she was given a clue of the numbers and she remembered the street name. When it came to the zip Tom gave her the answer. Cynthia Lyn asked her a little later, "Now what was that zip?" and Natalie said it again. Then after about thirty minutes NATALIE STILL REMEMBERED!!!

TOUCH
Touch startles Natalie so before touching her one needs to tell her they are going to touch her.

TODAY'S PLANS
Tom left this morning to go to the hospital and then on to work....he'll be back tonight. Nancy is playing tennis and then she will go to the hospital and spend the day. Laura, not going back to school until tomorrow, Sarah Ellen and Cynthia are spending the day at the hospital.

NATALIE NEEDS HER REST
Nancy told SE, CL and Laura that while at the hospital they would take a break and go have some lunch. Nancy said Natalie needs her rest. Sarah Ellen likened it to when your brain rest/sleeps that it has time to file away all of the things your learned and experienced that day. She said it is a lot easier to find a paper that has been filed than to have to look through a pile of loose papers.

NATALIE'S UPDATES
We are going to start to do Natalie's update once a week. My sister Elizabeth (Liz) will do the updates next Sunday. I know she will find it as rewarding as I have.

Natalie's Aunt Sarah

Sunday March 9th

Natalie got to go home today for a visit. Nancy said it was like bringing a new baby home. She and Tom were a little nervous.

Tom and Nancy brought Nancy's car to the hospital. The nurse brought Natalie out to the curb at 1:45 where Nancy and Tom met them with the car. It was difficult to get Natalie in the front seat of the car but all three of them finally managed. Natalie has difficultly putting weight on her foot and her balance is still off. On the trip home Natalie visited with Tom and Nancy and had something she was drinking. At the exit off the highway to go to the Schneider's Natalie got car sick. After cleaning up as best they could they continued home. It was quite difficult getting Natalie out of the car and into the house. Once inside Tom and Nancy looked at each other and realized they were both huffing and puffing. They rolled Natalie in her wheelchair into the den. They say Natalie knew she was home. There was some visiting and some being quiet. Natalie listened to TV for a while. Her friend Ray brought her dog over for a visit. Nancy asked Natalie if she were tired and Natalie said she was and she stretched out on the couch with her dog beside her and slept for 30 minutes. Ray came back to get Natalie's dog at 4:15 and Nancy asked Natalie if she were ready to go back and she was. A bathroom stop was made before Natalie left. Of course nothing is easy and Tom had to fix something before Natalie could go to the bathroom. When he went outside Natalie said to Nancy, "What IS HE DOING?!?!?" In the car Nancy and Tom had the window down and let the wind blow in Natalie's face which she loved. Tom fed Natalie Malted Milk balls. Back at the hospital Natalie ate her whole dinner and fed herself. She was wore out!

Natalie's friend Rachel called Natalie and her dog was barking in the background. She asked Natalie how to make the dog stop barking and Natalie said to tell him, "Stop it!" A week later Rachel called again-the dog was barking again-she asked Natalie how to stop the dog's barking and Natalie said to tell him, "Shut Up". The next week Rachel called again with the same question and Natalie said to tell him the Spanish word mamma use to use to tell us to be quiet, "Callate" (Natalie never heard Mamma use that word)

The last couple of days Natalie has been sneaky with her pills. When she is given her pills she hides them under her tongue.

Nancy said she couldn't brag on her sister Liz enough! She was absolutely great to help Nancy with so many things while she was visiting!

They have given Natalie a shot to block the pain in Natalie's foot.

Nancy thought it was humorous that Natalie has been a little concerned that Cynthia Lyn will want to cut her hair when she comes to visit. Tom was teasing her about it today and asked Natalie if Cynthia Lyn could just cut it a few inches and Natalie said, "She surely can't!"

I am glad Natalie got to go home this weekend. They are already talking about her perhaps going home again next weekend.

We are all so proud of you Natalie! you have come such a long way!

Until Wednesday,

Natalie's Aunt Sarah

Thursday March 7th

When I called Nancy for the update on Natalie tonight, Natalie got on the phone to tell me hello and visit. I asked her where she was and she said she was in Callaway. (She has many answers for the "Where are you?" question when I ask her...Austin, home, work, etc) I asked her if she knew who was coming to visit her in a week and she said, "I sure do. Your kids." Sarah Ellen and Cynthia Lyn made flight reservations to visit Natalie March 16-18. Nancy was beside herself she was so excited when Cynthia Lyn called her today! Natalie is so excited they are coming!

Sister Liz
Natalie's Aunt Liz gave me the update on Natalie tonight since she is in Kansas City visiting this week.

Aunt Sarah's Present to Natalie
I mailed Natalie a big, soft white "TY" teddy bear and she got it today. She unwrapped the package by herself. At first Natalie was holding the bear upside down and Liz told her to feel for the bear's head. Natalie did this and turned the bear right side up. Then Liz told Natalie to feel for the eyes and the nose. Natalie and everyone decided to name the bear "Huggy". Nancy said I should have seen her smile when she opened it. Nancy said she has a crooked smile but when she saw it BOTH sides smiled. It warmed my heart when Liz told me on the phone that Natalie had fallen asleep holding her bear.

Natalie has one to two thirty minute sessions a day of Physical, Occupational and Speech therapy. She also has rest periods scheduled throughout the day.

Physical Therapy
Natalie is scoring high in all areas except her Physical Therapy. What is holding her back is her foot. They are trying to straighten her curling foot back out and that is very painful. She wears a boot and takes pain medicine but all of this combined makes her walking difficult and any forward progress has virtually stopped...she has even regressed some. Also her leg has been cramping so they have given her Botox and tried different ways to stretch the muscle. Again painful. The Physical Therapist told Nancy that if it were not for the pain she believed Natalie would be walking. Now the "PT" tells Nancy that it may be a long time before Natalie walks. Yesterday Natalie wanted to give up on her Physical Therapy and she started to sit down in a chair. Her "PT" told Natalie that if Natalie sat down that the "PT" was going to take her down to the ground. (Sort of a consequence for Natal ie's wanting to quit.) It happened and on the ground Natalie began to cry. This was a lesson for Natalie and the "PT" explained that to Natalie. She told Natalie that she needed to work with the "PT", continue to try hard and that there were consequences for her actions.

Speech Therapy
Natalie's cognitive ability is really good. The speech therapist will ask Natalie questions like "What state begins with an "A"?" or "What animal begins with a "L"?" The "PT" will then give Natalie some hints if it is difficult for her and then Natalie will answer the question correctly.

Occupational Therapy
Consist of taking care of herself like dressing or brushing hair. Natalie helps with all of this. When handed chapstick Natalie can take off the cap and put it on her lips.

Eating & Drinking
Natalie can feed herself with assistance. She gets out of bed and sits in her wheelchair to eat. Her tray of food is simple and things are always put in the same place. Nancy or Tom will tell her to feel the edge of her plate and then Natalie may begin to eat. Natalie takes her plastic spoon and scoops up her food. Many times her soft/pureed food spills. She uses the plastic utensil because her teeth still hurt. She chews and swallows well. She can drink out of a plastic bottle and if it has a screw cap she can screw that off. She can also lift a cup to her mouth and drink.

Teeth
Nancy is still waiting on an answer of when Natalie is going to see about getting her teeth looked at. Natalie's teeth are painful. Also in the accident some of Natalie's teeth were broken and a couple were lost.

Nancy and Liz have been busy since Liz arrived!

Natalie's Room
Natalie's seven weeks in rehab was due to be over the week Liz returned to Florida but Natalie's stay has been extended for a couple more weeks. It may be extended again. There is a possibility that Natalie will go home the weekend Sarah Ellen and Cynthia Lyn are there. Since time is getting close for Natalie to go home Nancy and Liz decided to get Natalie's room ready in what is now Nancy's dining room. Tom and Nancy wanted Natalie to be on the main floor close to their bedroom. Today the hospital bed arrived complete with railing. They moved a chest-a-drawers in Natalie's room and put a few clothes in the drawers. They hung pictures on the wall even though Natalie can't see them, her visitors will comment on them to her. Nancy also bought a gate to put up at the basement stairs so Natalie wouldn't fall. They also hope to get Natalie's bathroom set up before Liz goes home.

Future Rehabs, etc
Nancy and Liz visited and toured the KC Rehab. Also they are investigating other rehabs. Friday they hope to tour Alpha Point which is a free rehab for the blind.

Tech Support
Liz did some internet investigation on various tech aids for Natalie. It is amazing what is out there. One was a "Sherlock Talking Label" which allows a helper to label food, clothes, etc and then when Natalie wants to know what it is she points this Sherlock thing at it and it tells her what it is. Then there is a "Screen Reader" that if Natalie were to point to her computer screen it would read to her what is there. Then there is the "Talking Bible". This is a devise that is no bigger than a remote for a TV and it will not only read the Bible to Natalie but it looks up verses. If she has difficulty with a word she can ask that it be spelled and it will do that. Great finds Liz!

Liz told me just before I hung up the phone that Natalie was hugging her bear.

Until next time,
Natalie's Aunt Sarah

Sunday March 2nd

I called Nancy's cell phone and who answered the phone but Natalie. We talked for a while which is always such a rewarding experience for me.

Tom was at the hospital with Natalie this afternoon when I called. He was feeding Natalie her dinner. He said that this afternoon he and Nancy had gotten Natalie some Pizza Hut pizza (cut up tiny) and orange Gatorade and Natalie had loved it. He said that today had been a beautiful day and they had taken Natalie outside in her wheelchair and rolled her around. "MAXIMOUS" was there visiting today also. Tom said Natalie was happier today. He also said that she was going to get a shower tonight and a good night sleep so that tomorrow she could be ready to really work on her walking. Her walking is another criteria for her half day pass which, if she is up to it, will be next Sunday. Tom and Natalie were watching a golf tournament on TV.

After I spoke to Tom I called Nancy who had just gotten home from the hospital. One thing Nancy added was that this past week they had given Natalie a piece of paper and a pen and Natalie started writing a letter to her friend Nick. She wrote a couple of sentences (not straight but she wrote) and then signed it "Love you, Natalie". Then Nancy asked her to write Nancy's full name and she did and then she did the same with Tom's full name. Nancy said things like this remind her that Natalie is not a baby but an adult and though sometimes the tendency is to treat her like a baby we all need to remember that Natalie is an adult. Nancy also told me that the Orthopedist suggested that Natalie's brace come off her leg. A week later her foot began to curl again and so they had to put the brace back on. This is a painful process to make this straight again.

The whole family is so excited about Natalie's Aunt Liz coming to visit from Florida tomorrow. Natalie even told me she was coming on the phone.

Work hard tomorrow Natalie so you can get that Sunday half day pass. We are all pulling for you!

Natalie's Aunt Sarah

Thursday Feb 28

NATALIE IS SAD
This past weekend after Max left to go back to school at Auburn, Nancy asked Natalie if she were sad and Natalie said, “I miss my brother”. Then Natalie cried, as she does, with real tears, a wrinkled chin but no sound. Max had spent some real quality time with Natalie this past weekend. Besides tossing the ball, wheeling around in the wheel chair, watching movies together they also made a list for what Natalie needed and wanted and Max went to Wal Mart to get her all of her favorite things. DVD, Pillow, suckers, beaded neck rest to name a few. When Max left he wrote a note to Natalie. He told her to stay strong, to hold up her Schneider shoulders, he’d see her in a month and that she was his best friend. One reason I am telling you all of this is that Natalie has been sad lately. Nancy said she may be sad/angry because she is grieving for the loss of her eyes but then again we don't really know why. This is a crucial time for Natalie and she needs to have a positive attitude/mood so that she will continue to work to move forward in her rehab. Nancy said it would be so helpful if Natalie’s peers could visit…her cousins…her friends. Natalie’s siblings are already visiting but others could really help Natalie’s moods also. This is the time….Natalie will probably be home in four weeks.

“MAXIMOUS”

Nancy called me back Sunday to ask me if I had already sent Natalie’s update because she had something else to add-They took Natalie’s dog an 85 pound, part Pit Bull, “MAXIMOUS” back to visit Natalie in the Hospital. They helped Natalie into the wheel chair and gave her “MAXIMOUS'” leash and though Natalie could barely hold on to him he pulled Natalie down the hall in the hospital. They all laughed until they cried INCLUDING NATALIE! (Natalie has a crooked smile) Natalie loved it!

WEEKEND PASS

Either this weekend or next Natalie may get a pass to go home for the afternoon. Two things she must accomplish first. She must not be afraid of steps* and she must master automobile in and out transfer. *(In PT Natalie walks up 4 steps and then she is frightened she is going to fall)

NATALIE'S TEETH

As I said before Natalie’s teeth are sore. As Nancy said Natalie’s teeth are “waking up”. They are putting Anbesol on her teeth to deaden them and she is using a plastic fork to eat. In a couple of weeks Natalie will go to the KU Dental School to see about this problem and later have cosmetic surgery done there on her teeth.

MEDICATION

The only medication Natalie is on is Ritalin, Anti-depressant, Prilosec for stomach and Tylenol. No more antibiotics, no insulin, no sleep meds, no pain-except Tylenol. And she is able to swallow pills now instead of having them crushed up and put in her food.

NATALIE'S APPEARANCE

Nancy says Natalie’s face has changed but basically she is still Natalie. Natalie has 8-10 plates in her facial area. Natalie’s lips and nose are shorter.

NATALIE'S KNEE

Good news is that the calcium build up in her knee has stopped growing-bad news it will continue to hurt until they do surgery which won’t be for a couple of years

WALKING

Monday Natalie walked 150 feet with Tom and Nancy at her side…only after Natalie gave them a hug. Natalie still needs assistance walking and that is done by holding her hand and putting a belt around her for a nurse to hold to assist her with balance. She does lift her feet and makes forward progress. She does have problems with balance in that she wants to have her “bottom” out instead of her pelvic forward.

MONDAY ASSESSMENT

Monday is Natalie’s Assessment day

Natalie’s ability has moved from a 39-43. Her progress is moving forward very fast. She has been their success story. She has been sad lately.

NEW WHEELCHAIR

This new wheelchair has no foot rest but Natalie can roll the chair with her hands moving the wheels. This will give her strength and let her figure out how to follow directives. For instance the nurses may tell Natalie that her room is behind her so she needs to turn around. Natalie turned 90 degrees and headed back to her room.

Tom continues to come every morning and every night and Nancy is there every day

I called Nancy tonight on her cell phone for the Wednesday night update on Natalie and who answered the phone but Natalie. I was so thrilled to hear her voice again! After I talked to Natalie for a while I talked to Nancy again. She was telling me something about Natalie and Grandmama (Our mamma but saying this for Natalie's benefit because this is what mamma's grandchildren called her) and Natalie overheard our conversation and Natalie started to cry again. Nancy was telling Natalie it was ok and I asked Nancy if I could talk to Natalie. I told Natalie that I was Aunt Sarah or Aunt Coco and I was the mother of Sarah Ellen and Cynthia Lyn. I told her that when my babies were little and they got sad I would ask them what was making them sad. Then I would tell them I was sorry they were sad. Finally I would tell them that we now needed to think of all the things that made us happy...Like Santa Claus and Mamma's that love us and anything else we could think of and it would make us happy again. I think Natalie did this.

Be happy Natalie and have sweet dreams.

We all love you,

Aunt Sarah

Sunday Feb 24

Just to introduce myself for those of you that don't know...I am Sarah, Nancy's oldest sister and I live in Mississippi. Sister Rebecca, Nancy's youngest sister, has done a wonderful job on Natalie's updates and now she is handing the torch off to me.

It is hard to believe that it has been over two months since Natalie's accident. It is truly a miracle she has come so far. Since she has been in "Rehab" for the last five weeks she has learned to walk, talk, eat, sit, swallow and that is just to name a few. The average stay in this "Rehab" is seven weeks. Natalie may stay more and may stay less. Plans for the future are to bring Natalie home and care for her after this "Rehab". Once a day she will go to an "Outpatient" type rehab called the Rehab Institute of Kansas City. Next there is Alpha Point and this has been discussed before. It is an 18 month program that will teach Natalie everything she needs to know to be able to be self sufficient. But for now Nancy, Tom, Natalie, Max, Laura and Derek are taking one day at a time and today's news is....

Cognitive Ability
Nancy tells me that Natalie remembers almost everything from the past. What Natalie is having some trouble with now is her short term memory. That is coming back to her as she exercises her mind.
She knows all of her numbers and can count. She was asked what a quarter and a dime was equal to and Natalie answered with a hint thirty-five cents.
It is hard for Natalie to concentrate on more than one thing at a time and since she is so close to the nurses station Nancy got her some Noise Reducing Headphones. She can now listen to her music and not have added noise.

Speech
The speech therapist asked Natalie if she were happy and Natalie was a little confused. The therapist then asked the question in a different way, "Natalie are you sad?" Natalie said, "No" Then the therapist said, "Natalie are you happy?" Natalie said, "Yes".
This brings me to phone calls. Nancy has been encouraging calls to Natalie. I talked to Natalie yesterday and it was as everyone had told me...AWESOME! It was like I was talking to an angel-it was a miracle! As Nancy says her speech is still "Robotic" but she is using more words everyday. Natalie has a very distinctive voice and there is no doubt ....it is Natalie! I asked Nancy what protocol I should follow when talking to Natalie and Nancy said, "Tell her who you are. Tell her where you are. If you ask questions that require more than a yes or no answer and you see Natalie struggling...give her a hint."

Emotions
Tom and Nancy were concerned about Natalie's being able to show emotions since her brain damage was to the right temporal and frontal area of the brain which controls emotions. Somehow her brain has gotten around or compensated for that problem. As Nancy said Natalie has laughed, cried, smiled, been aggravated, and more!

Physical Ability
Natalie is walking more this week. Natalie was in Physical Therapy last week and everyone was thrilled that she walked the length of the parallel bars TWICE. By the end of the week Natalie was walking the length of the hall. Her helpers do go behind her with a wheelchair in case she wants to sit and rest for a while.
Natalie is stronger in her back muscles and this makes transfers from bed to wheelchairs, etc much easier.
Her physical therapy sessions are longer because Natalie has more stamina.

Adapting to her loss of sight
Natalie's hearing has improved which happens many times to compensate for the loss of one's sight. Nancy said Natalie's hands are becoming her eyes. Nancy got her a watch that says the time and Natalie loves it. She plays with it all of the time and in physical therapy they had to take it from her so she could concentrate on her therapy instead of her new toy.

Leg & Foot Problems
Natalie right foot hurts and x-rays don't show any reason for the pain. This is the foot that was on the accelerator during the accident. Nancy says her toes are curling under sort of like her cousin Willis' were before he had them operated on when he was a baby. Doctors have told Nancy that sometimes the curling is caused by the pain Natalie went through after the accident. They have given her a shot of Botox and put a brace on her leg to attempt to straighten it out.
Also there is a problem with her left knee. Somehow is was hurt just enough in the accident that there is a calcium build up. This is causing some pain but the doctors are reluctant to operate because they want Natalie to heal and if the calcium is scraped off it will just come back.
(First responders told Nancy that they were surprised that both legs were not broken.)

Eating-Drinking
Natalie is drinking lots of water and her swallowing reflex is definitely there.
Her food is pureed for now and she will graduate to soft food soon.
Her teeth are hurting and Nancy said this will be addressed this week. They want nothing to interfere with her eating.

Home for a visit
Nancy says it seems to be very helpful when family & friends are around Natalie in her hospital room. Natalie gets twice the care from friends/family AND the nurses.
Natalie's brother and sister, Max and Laura have been home from college this weekend. They have been "hanging out" with Natalie most of the weekend. They have pushed her down the hall in her wheelchair and tossed her a tennis ball. Today they were all three in Natalie's bed eating lunch. Laura came home to pack and go back to school this afternoon and Max was with Natalie watching "The Godfather" on TV. Natalie couldn't see so Max was telling her everything that was going on.
Nancy's sister Elizabeth is coming for a visit soon and Nancy is so thrilled.

Appearance
Natalie's hair has grown out an inch.
She has no patches over her eyes and you can see if she is awake or asleep. If she is awake there is a small slit that reveals her eyeball that is still in tact.

Natalie is out of Isolation/Quarantine
This is another big happening this past week. Natalie had a bacteria in her mouth which now that her Trach is out this bacteria has gone away. We all have this bacteria except we can rinse or wash it out when we eat. Since Natalie couldn't eat she couldn't wash out her bacteria. While Natalie had this she was in isolation and everyone entering her room had to wear a mask and yellow clothing. Everyone is glad this is no longer a problem.

Maximus Jordan
I have no idea if I am spelling Natalie's dog's name correctly but he came to visit Natalie in the hospital. Natalie loves this dog so Nancy brought it to the hospital twice this week. When Maximus crawled up in the bed with Natalie it sort of scared Natalie. Can't say I blame Natalie on that one! Anyway some time after Nancy and Maximus left and went home Nancy called Natalie to ask her if she wanted Maximus to come back to the hospital for ANOTHER visit. Natalie said, "I sure don't!" It is good to hear that Natalie has definite opinions and likes & dislikes. Nancy thinks that it was frightening for Natalie not to be able to see her dog and also it was scary to think how she will be able to take care of it. Nancy did call to find out if it was OK to have a PET dog and a SERVICE dog and they said it was fine. I guess it is just another thing for Natalie to get use to...

Continue to keep Natalie in your thoughts and prayers.

So until Wednesday,

Sarah

Wednesday Feb 20

Yesterday Nancy called for Sarah Ellen's phone number. Nancy asked Natalie who she wanted to call, "SaranEllen", she said just like when she was little. I heard Nancy say, "Did you get that? Did you write down that number?" They had to quickly make that call and as I hung up, I wondered if Natalie was writing down that phone number.

Later Nancy called me back while driving home from her daily visit with Natalie at KUMed. Nancy spent a couple of hours laying up in the bed beside Natalie "gabbing". I wonder if Natalie enjoys that because the touch is part of the visit ~ another way of connecting. Natalie told her mother that she will have to see with her hands now.

Friends sent Natalie flowers which she enjoys smelling. Also, Gina, sent her a D'Auberge (sp?!) Cake from New Orleans which Natalie mashed up, mixed with a little soda...she loved that tasty treat! (Smell and Taste are in good order and are more evident now that ALL HER TUBES ARE GONE!) They couldn't finish all the cake and Natalie was pleased to share it with the nurses.

Yesterday one of the PTs asked Natalie how she was feeling and she said "happy".

Another time Natalie asked Nancy to get up in the bed with her and lay down. Nancy put her arm around Natalie and when Nancy started to move it, Natalie objected. She wanted to lay there in each others arms together. Nancy says its been a long, long time since her 24 year old daughter wanted to be held in her mother's arms...it felt so good and sweet and safe and loving.

Rachel may be coming this weekend. Nancy hasn't heard yet. Max comes home this weekend for a visit. I think Natalie's brothers and sister must be rotating regular visits home. That was part of the "deal" when they returned to college. It made it easier for all of them to go knowing they could count on more frequent trips back home to see their oldest sister. I don't know how a family could be any closer! That has always been such a remarkable trait of the Schneider family. They have an uncanny closeness. They defend and support one another unlike any other I've known. As Nancy and Tom told Natalie, "This situation is a family problem and the family will all work together for Natalie's recovery and for the rest of her life!" That security must feel good to all of them, especially to Natalie, and I've no doubt that is a big part of the reason she is "Happy"!

For some reason as I write these updates, songs come to mind as I close... This time its..."We are family, my borthers and sisters and me...!" (amazing 'cause I can never remember words to songs - only snippets!)

I am handing the "update baton" over to oldest sister, Sarah, who lives in Mississippi. She is looking forward to doing the twice a week updates now that she's settled back at home after her travels. Thanks, Sarah, and I'll look forward to your postings each time.

With Love, Becka (baby sister with Liz, my twinsome)

Sunday February 19, 9:53pm

Natalie had a fairly tedious week after hearing that her eyes “don’t work”. She seemed to be resting more deeply whether due to diet (now that she’s eating orally), exhaustion from her PT, the news, or just a phase.

Natalie’s not been wearing eye patches which can be shocking at first, “but you get used to it pretty quickly.” The ophthalmologist says he will soon have a plastic surgeon begin work on her prosthesis. They will only do one eye and wait to see if anything can be done with what’s left of her other one.

It was a busy weekend with Lauren visiting from Houston and Derek home from LSU. When Lauren arrived at the hospital, Natalie scooted right over inviting her to lay down beside her for a visit. Derek says he’s more comfortable hanging out with Natalie now that she’s out of ICU. It’s not as scary. He drove over to Mizzou to visit Laura and other friends one day. He spent some one-on-one time visiting with Natalie while Tom took Lauren to the airport this afternoon.

Nancy’s been reminding Natalie how to kiss by showing her how to purse her lips, making a kiss noise, and kissing Natalie a lot. Today she kissed her mother….”her first kiss!”… Nancy said.

It was nice for Natalie to have so much company and it gave Nancy a much needed break. She whispered in Natalie’s ear (as she often does) that she was going to let these others have some time with her since she’d be back on duty after they left next week. This afternoon Nancy spent 2-3 hours with her old “Blue Springs Bombers” Moms. It felt good to have a drink and laugh and reminisce about when they all had kids playing sports together.

Max and Derek plan to spend their spring break in Mexico together and Nancy’s pleased to have that house renting well this season. Life goes on. Isn’t it nice to think beyond the moment? Isn’t it nice to look just around the corner and not be afraid, but excited about the next small accomplishment?!

Work hard, Natalie! We’re all rooting for you. Hang in there Nancy and Tom…another week of progress. You inspire us all as we go through the motions of our week ahead.

Natalie received devastating news on Valentine’s Day last week – that she is blind. The outpouring of love from Nancy and Tom as they spent that afternoon soothing their girl was a far more beautiful gesture than mere chocolate or flowers. There were no more heartfelt moments anywhere.

All we need is love …love…love…love… Becka

Friday, February 15, 8:15pm

Yesterday, Thursday, February 14, they told Natalie she was blind. The anticipation turned out to be harder than the actual moment, and although Natalie didn't seem to react a lot, Nancy believed she understood - though didn't really absorb the full impact. Tom, Nancy, and various doctors were present to provide whatever support was needed. At one point, with Natalie standing (with help), they asked if she wanted to go hug Tom. She did, but first she had a question: "Where are you, Dad?" - the first verbal indicator that she knew she couldn't see.

Physically, Natalie is continues to make remarkable strides (again that pun...). She had enough of the walker and pushed it aside, and with the continuing support of 2 PT's pushed on. One struggling step after another. Then with Tom, her adored and adoring father standing in front of her, holding her hands and walking backward (still with the PT's on each side), she walked down the entire hallway. The determination in her practically shouts out with each thing she tries.

Today, inevitably, some awareness and heartbreak settled in.... Natalie was a bit more subdued than usual, and Nancy's mother instincts knew to ask the question.... are you sad? Natalie said yes, then began to cry - for the first time in her ordeal...

I'm sure the fact of her blindness will continue to sink in. There will be good days and trying days. They say, with something like this, people go through all the stages of grieving.
Denial: The initial stage: "It can't be happening."
Anger: "Why me? It's not fair."
Bargaining: "Just let me live to see my children graduate."
Depression: "I'm so sad, why bother with anything?"
Acceptance: "It's going to be OK."
Who can imagine... Nancy told me when I was visiting that if she could trade places with Natalie, suffer this for her, she would do it in a heartbeat. I have no doubt she would.

With a mother, a father, and a family like this - and Natalie's own determination - whatever the struggle, and no matter how long it takes, she will find her way through.

I am in awe of them all.
Cynthia

Wednesday, February 13, 2008

The doctors decided to postpone telling Natalie that she is blind. Today she ate pureed "real" food - she can eat and swallow! At the end of the week her G-tube will likely be removed. She is also taking her meds orally now.

She sat up the entire day without support. In physical therapy she continues learning to walk and has started walking on stairs. She does all of this with assistance but is making huge progress each day - she is constantly improving.

Tonight I came home and called Natalie. Hearing her voice for the first time in months was incredible. It is hard to comprehend and accept what has happened, but listening to Natalie say (when I asked her how her day was) "It was good, yours?" gave me a whole new sense of hope and I'm sure everyone else who has talked to her feels the same.

Prayers and love (as always),
Jessica Kennedy (Natalie's Cousin)

 

Monday, February 11 8:38pm

I spoke to Nancy this afternoon - some more big strides today (no pun intended). Natalie walked down the hallway today with the aid of a walker and was able to go up a couple of steps! These things are, of course, done slowly and with a lot of coaxing and help from physical therapists, but Natalie progresses so much every single day... it's quite remarkable.

The big news is that the docs have recommended to Nancy that they go ahead and tell Natalie that she's blind (instead of waiting for her to ask). Nancy is inclined to go with the doc's advice. They will all assemble - including Nancy and Tom - to tell her.... and hope for the best. It is still uncertain as to whether or not she will "get it", or, if she does, whether she will remember it the next day. The thinking is that rather than waiting until she asks which may not be when the important support is there, that they will tell her when they know everyone will be present.

Pray for them all.

Cynthia

Monday, February 11 1:06pm

I’ve just come back from visiting the Schneiders and thought people might be interested in my observations. This isn’t so much about the ongoing “events” that Becka has been describing so well – more about details and clarifications. This is long and detailed, so read it or not…

On appearance: Natalie looks like Natalie… but different. Most of her face appears remarkably unscathed – no scars, lovely skin… but there are some differences: her forehead appears to slant back more than it did before, and the hair in the front is very short having been shaved off for surgery (the scar in her scalp quite visible); obviously the absence of eyes (one is covered with a bandage, the other isn’t) gives them a sunken look; most of her teeth have been broken and that is almost always visible because she doesn’t close her lips over them. Her mouth is most often in a gaping position as if she’s too tired to close it, but she can close it, does so when asked, and even occasionally manages a little smile. All of this, however, is cosmetic and was remarkably untroubling for me, except as a reminder that she’s been through…

Her hands tremble and fidget almost constantly. She feels her clothes, her hair, tries to take off the eye patch, touches her lips, her throat where the trachea was, pulls on the catheter… busy, busy hands. The hospital and Nancy and Tom have given her little stuffed animals to occupy her hands and she is either clutching them or fidgeting with them whenever she has them. I got the strange sense that her busy fingers were like “eyes”, that she was trying to figure things out by touching everything. I also got the sense that she was most inclined to try to take off her eye bandage when she wanted to “see” what was going on. These were just my impressions, but it seemed borne out – something new would happen, somebody would say something, or someone else would come in or go out – and she would start to take off the bandage. She plays with her hair a lot – one time suddenly taking both hands to twist it into a bun – on her own (I would have thought she was too weak) – one of the many moments that would suddenly punch through the situation and shock me. You find yourself thinking, wow, she can do that?! In other ways, too, her body overall seems very weak – then suddenly surprisingly strong. She appears to have trouble (weak and trembling to reach for something when they tell her to), then suddenly sits up in her wheelchair. (When she’s not in bed or PT, she often sits in her room in her wheelchair which is in a reclining position.) She will sit up a moment or two, then lean back again, then sit up – again and again - I got the sense when she was like this, that she wanted to get up and get on with it. I don’t know if this “agitation” is drug induced or purposeful on Natalie’s part – probably a little of both. There is a scar on her ankle; the knee on the other leg has a bone growth that is painful for her (more so than the ankle); the catheter and g-tube remain, and she has an IV setup in her arm (probably to administer drugs), but not connected to anything. The overall image is that she’s weak and ill, but she seems remarkably unscathed for what she has been through.

Mental acuity: this is the most intriguing, the most surprising, and the most puzzling part. How “aware” is she? What is she thinking? What does she know about what has happened? Just when you think you have a sense of it, she does something surprising, even shocking. My feeling after watching her for a few days is that she slips in and out of awareness. But just when you think she has slipped out of awareness (and isn’t responding to questions), she will suddenly say something that makes you think that she just couldn’t be bothered to respond until that moment. For example, in PT, when they were trying to help her walk, she was having a lot of trouble moving her left leg (the right has the broken ankle). 2 PT’s are with her, one at her feet trying to help her understand to shift her weight, then move the other leg…this went on for a bit and you could see she was trying – they’re urging, coaching, come on, come on…finally she said, clear as day, even with a little attitude – “that’s as far as it will go”.

I don’t see any fear in Natalie except when she is moved (like from the wheelchair to the bed) – then she looks a little like an infant who is doing a “startle reflex”. She is quickly soothed when reassured, but it seems to me quite reasonable – natural that she would startle when her body is moved dramatically and suddenly – and she can’t see. Sometimes she seems confused, even overwhelmed when there is a lot of activity or when she is peppered with questions. In these moments, she gets more fidgety. Sometimes she seems a little impatient; people ask her a question and you imagine she’s thinking “duh, I know that”; other times you can almost see her reaching around in her head to try to find the word she’s looking for, then giving up. The word isn’t there. Then there are the times when she seems perfectly coherent and having a conversation with someone (usually on the phone – a curiosity to me… is she more comfortable on the phone? Is it because on the phone, she doesn’t expect to see the person on the phone? Etc…). Her voice is softer, but clearly Natalie. She does really well on the phone for a few moments, but then seems to “zone out” with nothing else to say. It is easier for her to respond to questions (and her answers are often surprising), than to initiate conversation. There are a few things she seems to just echo back, but more and more it is real conversation, albeit limited. Her short term memory seems good, if sometimes delayed, but these are about little things like who I was, that I was there, who a caregiver is, what she ate, etc. She seems to have several longer term memories – in snippets – of things that meant a lot to her, like her dog’s name, who he was named after (Michael Jordan), what color her dog is, Michael Jordan’s jersey number (!!!). Her energy and excitement are slightly elevated (and she seems a bit more coherent) when she talks to people she’s close to; her friend, Carrie, her cousin, Brian, her siblings or parents.

Most of the time she appears to not know where she is or what happened. Part of me feels like she doesn’t want to know – isn’t ready to know. When asked, she will tell you she’s at the gas station, or on her friend’s sofa “chillin”, or at the Quik Stop with her mom having ice cream. The docs have told Nancy to gently correct her which Nancy does with “you’ve had an accident, and you’re in the hospital getting well.” Much of the time Natalie appears to be in a “fog”, but it doesn’t seem like a bad place. It’s as if she’s inside a soft, white pillow of nothingness, an easy place where she can go to rest. Then, in the blink of an eye, she comes back to interact, so much herself… and then she goes again as if she’s bored with us or just tired and wants to go back to that sweet, quiet place in her head. One thing that was so very clear – and so encouraging – is that she has clear opinions. Yes, she likes this, no, she doesn’t like that. Sometimes she will respond to someone’s affection – other times she pushes them away. When Laura came, she got up in the bed with her sister, telling Nat to scooch over. At first Natalie pushed her away, but Laura said please and Nat let her. The 2 sisters cuddled up like that… beyond adorable. I’d say the best way to think of how Natalie’s brain seems to be working is like the old dial-up connection to the internet. It takes a minute to “log on”, sometimes the connection takes a beat or two, and sometimes in the middle of something, you get “dropped” offline.

I guess the biggest question for me was, how does she not know she’s blind? The explanation I came up with for myself was that it was like childbirth. Mamma used to say that women could stand the pain because God had his own way of anesthetizing us – our bodies do a “disconnect” from the total experience. Or, the way we are naturally anesthetized and “disconnected” when we are traumatically wounded – the psychology of going into shock. We are physiologically prevented from being fully aware. Because we need to be. Our bodies and minds shut down to only what we have to deal with at that moment, the rest coming in bits and pieces until we have the whole awareness. Personally, I’m glad she’s not aware. There are plenty of other things to deal with first, and she will need all her strength to deal with the full awareness when it comes. Meanwhile she is still “watched” 24 hours a day by Constant Observers (CO’s) who monitor and make notes of all her activity. She is bathed every other day, and is visited and worked with by a physical therapist (learning to move her body, walk, etc.), a speech therapist (remembering words, what things are called, taught to eat, etc., and an occupational therapist (learning to dress herself, etc.) every day except Sunday. Both parents see her every day. She seems especially responsive to Tom who goes to check on her and spend some time with her before and after work every single day. Weekends, he lies on the bed with her and they watch sports. He talks to her a lot, soothes her, rubs her arm….I can’t begin to tell you what this extraordinary father is like…. Nancy, too, is with Natalie for some part of every day, and seems to ride into the hospital on some kind of magic carpet of optimism. She celebrates every tiny triumph, and only in her most quiet private moments lets herself feel her own broken heart. Tears come as she grieves for what Natalie has lost – then in a moment, she wipes them away and speaks again – “you should have seen her! She fed herself applesauce!” I am stunned, awed and moved by both of these remarkable parents. And their love for their girl.

When Natalie can walk (maybe, at least go from bed to wheelchair, etc.), go to the bathroom, feed herself, and has some physical strength back, she will go home to Nancy and Tom’s (they think this will take another 5-6 weeks or so). They will set up a place for her to be on the main floor of the house, and take her back and forth to continuing therapy every day – an outpatient thing, and Natalie will continue with her recovery like this for some time… months? Longer term… who knows? I do know that Nancy and Tom will do whatever it takes. Best case, maybe one day Natalie can live on her own…

Every little thing seems a miracle, a spoon full of applesauce she feeds herself, an opinion (yes or no), a smile, an unexpected answer or comment… but they are little things nonetheless. It is, and will continue to be, a painstaking process. But I came away with a clear feeling that Natalie WILL recover most of herself eventually. I’m sure there will be things in the “hard drive” of her memory that are never recovered (hey, there’s a lot that’s happened in my life that I don’t remember!), and like my friend who suffered a TBI, thoughts, words, etc. will take longer to “find” (don’t we call that “having a senior moment” now?), but Natalie is determined. You can plainly see that she wants to get better, that she WANTS to move that foot, take that spoon in her hand, and I think her stubbornness will serve her well. I still worry that she will become disheartened when she realizes she’s blind, but she has an incredibly loving and supportive family – and a mother with boundless optimism – a patient and devoted father – brothers and a sister who, I have no doubt, will stand by her forever - and they will all cajole her, push her, encourage her, even get in her face if need be – and they will help her get through even that.

I encourage her friends and extended family to call her at the hospital – like I said she does well on phone. The CO can hand her the phone. Talk as long as she seems responsive, then wrap it up for her… trust me, you’ll be astounded. And I think the contact is good for Natalie and will help her start to remember more and more. The best times to call are: 12-1:30 PM or 4-7:30 PM CST, 913-588-3092.

Cynthia

Sunday, February 10, 2008

Nancy and Tom called on their way home after spending the whole afternoon with Natalie. Tom said they had a great time …they “really worked her over”. He explained they talked a lot and moved her a lot and exhausted her with visiting.

Laura dropped by to tell Natalie goodbye before returning to Mizzou. Cynthia also came by on her way to the airport to say goodbye. Her visit meant so much to Nan. It was a nice distraction and the best long talks!

As of yesterday Natalie is completely off antibiotics. She seems more and more alert all the time. She called to thank her friend, Rachel, for taking care of Maximus. Natalie knows her dog’s name and color. While she was on the phone with Rachel, Nancy and Tom looked at one another when they both heard her laugh for the first time…Just a “ha”, but surely a laugh!

Sometimes Natalie knows where she is and sometimes she doesn’t…often when Nancy asks Natalie where she is she says, “Chillin’ on Lauren’s couch.” They have to remind her that she’s in the hospital and recovering from an accident… They tell her Lauren is coming to visit this weekend and sometimes she remembers, sometimes she doesn’t. They are hoping Lauren will bring along some jewelry to make while she’s visiting Natalie. The other day Tom asked Natalie where she was and she said, “getting gas.” Her mind is just fascinating!

Nancy and Tom are looking forward to having Derek home next weekend. He will be amazed by the changes since he left!

With Love, Becka

Wednesday, February 6, 2008

Nancy is headed to the airport now to pick up Cynthia whose flight was rescheduled yesterday. She’s excited about her big sister’s first visit to Kansas City. Laura will come home from Mizzou to spend Saturday night with them and visit Natalie.

Natalie continues to work very hard. Her progress is slow and amazing all at once.

Her ophthalmologist checked her eyes today and they appear to be healing well. Eventually she will be fitted for prostheses. Still there has been no discussion with Natalie about her blindness.

Natalie’s speaks more clearly and her voice gets stronger every day. At first she was echoing… “I love you” “I love you too”. Sometimes now her conversations are deeper. For instance when Aunt Liz asked her on the telephone who was her “FA” and did she know what that meant, Natalie thought a moment and said, “Favorite Aunt”. Nancy’s always been “FA” of the Saunders Family.

Natalie’s physical therapists believe she needs to bear weight on her repaired leg, so they’ve begun to teaching her how to walk using parallel bars. They hope her foot will begin to flatten out, but it’s a balance to be sure she’s comfortable while pushing her. After just one session she was able to walk the length of the bars.

Since her trachea has been removed Natalie’s has tasted a bit of sherbet ice cream and actually fed it to herself with a small plastic spoon. Those are the sorts of momentous tasks that portend big things to come! Her swallowing is good and she is a smart, fast learner.

Natalie’s collar has been removed and she’s building strength in her neck. She’s already moving her head about and she’s been doing curls while in bed.

When the doctor asked Natalie, “How bad does it hurt?” She responded, “It hurts like shit!” Nancy says this is the phase where all inhibitions are gone. Knowing Nancy and Natalie, that might not be so hard.

Nancy says this situation shows Natalie’s raw character and she is amazed by how hard she tries and works ~ she’s obviously driven to get better. That alone is a lot of the battle. Nancy’s learned a lot from the staff about how to meet Natalie’s needs and help her to remember things, but she feels like her motherly instinct directs her best just like when Natalie was a baby. In a way that’s an empowering and sweet feeling for mother and daughter...silver linings!

Yesterday Nancy asked Natalie what day it was and she was puzzled until Nancy prompted, “Fat…?” Natalie blurted out “Fat Tuesday.” Everyone out there knows that the Schneider Family would wish them all a very happy, however belated, Mardi Gras!

With Love, Becka

Sunday, February 3, 2008

Not much to report from my conversations with Nancy over the last few days.
A couple of little vignettes to share:

When Tom handed Natalie a pen and paper yesterday she took the top off the Bic pen and held it to write, but then seemed lost.
So she replaced the top on the pen and handed it back to Tom.
also...
Nancy called me one morning crying. Very quickly she explained - tears of happiness!
She'd just spoken to Natalie on the telephone.
Tom was having his usual morning visit with Nat and asked if she wanted to talk with her mother who was at home.
Nancy, "Hello, Natalie"
Nat, "Hello"
Nancy, "good morning"
Nat, "Good morning, Mom"
Nancy, "How are you?"
Nat, "I'm good"
Nancy, "I love you, Natalie"
Natalie, "I love you too"
I don't recall her exact words, but the point is A WHOLE CONVERSATION. Nancy said it was "Magic".

Medically speaking, Natalie seems to be getting enunciating more clearly and her voice is stronger. Her catheter has been put back in. It seems she was not quite ready to have it removed, but she will continue to be weaned from it.

Tom continues to be steady as a rock - visiting every morning frist thing and telling Natalie good night every evening. Nancy says Tom really has a way with Natalie.
Nancy says she thinks she's lost weight since December 11th through tears alone!

Cynthia comes on Tuesday and Nancy is thrilled to have her sister visiting from California.

Nancy and Tom are watching the Super Bowl with Natalie as I type this, but they'll leave at half time since Natalie is asleep.

With Love, Becka

Wednesday, Jan. 30, 2008

Nancy and I continue to talk daily, so I’ve been taking some notes for tonight’s update.

Natalie’s day has taken on a routine of dressing followed by rehab visits to her speech and physical therapists both morning and afternoon. Natalie trache has been uncapped for 72 hours now and it is expected to be removed maybe by week’s end. Drinking, speaking, and then eating will be easier without it. For now she still has her “G” tube. Yesterday her catheter was removed. Incredible improvements! Natalie took an assisted shower in a big room with hand sprayers where she helped soap herself. She kept telling the attendants, "Thank You." Nancy said sometimes she sees Natalie picking at her eyes but she doesn't ask about her blindness. Natalie is not to the point of comprehending it yet. Natalie’s progress is obvious to observers as she begins to participate more and more with things like transferring to and from her bed. She uses a wheelchair because her ankle is not healed enough yet to bear weight. There are little miracles, baby steps, and lots of work.

“Nat-bird” greeted Nancy and Tom today with, “hi”, but didn’t speak much to anyone else. Natalie called a couple of her friends on the cell phone. She says, “Hi, how ya doin’?” Just like always, but not much conversation from there. Nancy notices she’s gaining some strength as she’s sitting up better even if briefly. Hopefully her “collar” will come off soon which will allow for more range of motion in her head and neck. They continue to count their blessings.

Nancy is looking forward to a massage tomorrow and brunch, a gift from her “tennis girls”. Also, Cynthia will be coming on Tuesday for several days. Making some plans… Not so long ago, we didn’t dare think beyond right now! Natalie’s come a long way and is continuing to work hard!

Terri, our wonderful, generous webmaster, shared statistics today with Nancy that are apparently “phenomenal”. Nancy wants me to let everyone “out there” know how enormous it makes her heart feel. She is blown away by the love and power and strength and energy and electricity that has been generated by so many long lost friends, every day friends, family, and perfect strangers. The many kind words and deeds are overwhelming. Each “hit” is like a touch and it’s working! Those virtual healing hands are on Natalie as she recovers. Thank you all!

Love, Becka

Sunday, Jan. 27, 2008

Nancy called a few minutes ago and says it has been a fairly quiet day today. Maybe it is the 60 degree weather and those "southern healing winds." She spent this evening down at the hospital with Natalie while Max flew back to Auburn. When she got to the hospical Ashley and Lindsey were both there and Nancy says they've have been such loyal friends. They all tended to Natalie's personal hygeine together. Some things they can do better than the nurses even if they are good! Nancy hopes to speak with the Opthalmologist again, but mostly tomorrow she'll sit with Natalie. Natalie said "Yes" when Nancy asked if she could hear her. When the nurse asked as she passed by, "how's your night?"...Natalie said, "it was okay". Nancy says the doctors think she will continue to make these sorts of improvements.
As Nancy says...not much news tonight, but she did want to be sure to leave some brief update since we'll be going to Wednesdays and Sundays.
Until then she send many thanks to all those who've sent well wishes and who've helped in so many other ways too.
Looking toward another week of small, but significant hurdles.
With Love, Becka

Saturday, Jan. 26, 2008

Nancy called me late morning today. She was emotional and at first I worried. She said Natalie had a fever last night and since infection is cause for concern, Nancy didn't get much sleep. So she hurried on down to KUMed earlier than usual this morning to be sure all was okay and speak with the staff and Natalie's doctors. She was assured that the antibiotics are working and her white cell count was now good. Feeling better and not quite so blue, Nancy put on some of Natalie's music in her room. Laura called and the three were visiting when Nancy said, "Here Laura, speak to Natalie" and she handed Nat the cell phone. Natalie took it and said to Laura, "I love you." Laura said, "I Love you too, Natalie." Nancy was so excited!
Max has been visiting over this weekend. He came home to escort Laura to some event at Mizzou and also to see his other friends. He called a few minutes later and when Nancy handed Natalie the phone she said, "Hi, Max."

Pretty as you please.
Maybe Rumplstilskin had a TBI....hmmm...
It is awesome how she's waking up and to see what she knows and to wonder what it means....
AWAKE IN '08!

With Love, Becka

PS Tomorrow we will begin to post updates and notes twice a week ~ on Sundays and Wednesdays. Now that Natalie is in her own room and in rehab her progress is slower. We may also do additional posts if something exciting happens, but you'll be notified by email if you've signed up for that feature on the website. :-)

January 24, 2008 7:45 Central

It was -1 degree this morning in Kansas City and Nancy was getting a slow start when we spoke this morning. She said that yesterday she began to realize what a long process Natalie’s rehab will be. Natalie is weak and getting her dressed, even with her helping by trying to lift her own weight, proves to be a very difficult task to do or watch. Because Natalie continues to rub her leg, her hip & leg were x-rayed again yesterday and another MRI was done on her knee. Apparently when one is motionless over long periods the bones can grow back differently and cause pain. This can be fixed later, but not for 18 months to 2 years.

Natalie is being moved now by wheelchair to various therapy places such as the speech room or the gym. Nancy thinks it is good for Natalie to move about and it is easier for the therapists to work with her in these various settings and out of her bed. She was dressed in a loose fitting pair of draw-string pants and when Natalie saw the string, she reached down and tied it…naturally. These sorts of things are like “turning on the brain.” The knowledge is already there, but accessing it is the challenge. Natalie also shows “visual memory”. She almost appears to see things. For instance she appears to look down at the keyboard when given Nancy’s laptop and she looks at the cell phone as she presses buttons.

The nursing staff is sometimes surprised by the strength in Natalie’s grip or arms. Nancy was talking to “Dolly Wood” (what a name!), an oriental PT helping with Natalie’s rehab, and learned that she was being transferred to another unit. Although the change is mildly upsetting to Nancy her replacement will be bringing along 2 graduate students to work with Natalie because she wants them “to see a success”. She says they are encouraged with Natalie “moving so fast.”

The nurses asked Nancy to bring some deodorant for Natalie today. When they handed it to Natalie she knew exactly how to use it and did! Nancy thought of Grandad all day since Natalie was wearing a Life Support T-shirt. Natalie is being fitted for a smaller trach and they hope to remove it altogether in a couple of weeks.

Of course Tom continues to see Natalie every morning on his way to work and then goes by to tell her goodnight before he heads home. I imagine that must be very comforting for Natalie. She’s lucky to have such great parents! And we’re all lucky to have Natalie.

Love, Becka

Tuesday, January 22,2008 7:20pm

Natalie is currently in the "Spontaneous Awakening" phase of her recovery which means that a lot of what she is doing is happening "on its own" and is not necessarily the result of her rehab regimen...yet. This is typical in the early stages of brain injury. There is a standard of 10 phases created by the Rancho Los Amigos Hospital on which Natalie is currently rated a "4". There are protocols for each stage and at "4" agitation can occur, so calming stimulus is best. Routines are important just like with a child. For anyone interested in exploring the details they may be found at http://www.rancho.org/patient_education/bi_cognition.pdf
Natalie spent about 10 minutes balancing herself in a sitting position with her legs hanging off the bed today. In rehab they are teaching her to try to catch herself by grabbing the railing when she loses her balance. Nancy said that when Natalie's nose itched it was no problem for her to scratch it without even thinking about balance. Natalie said the word "Bye" today, but Nancy wasn't there to hear it. We parents know that we can't be there for every single improvement, but we sure get excited about each one! Remember, Natalie and family, we're all cheering you on...every step of the way back!
By the way...Nancy didn't get to the movie last night and its called "Cloverfield"...
What an amazing family, those Schneiders!
With Love,
Becka

MLK Monday January 21st 7:03pm

I just spoke with Nancy who was enroute home after spending 4 hours with Natalie in rehab this afternoon. She updated me on Nat's progress.
This morning Tom visited with Natalie while Nancy played tennis with friends. During Tom's stay the nurse had laid some papers on Natalie's bed. Natalie acted like she was going to pick them up, so the nurse said, "let's try something". She placed something hard under the papers and put a pen in Natalie's hand and asked her to draw an "O"....and SHE DID! Then she asked her to draw and "A"...and again, SHE DID! Later in the morning, Lindsey, one of Natalie's best friends, came to stay with Natalie from 10:30-2:30pm. She had a couple of other friends with her and they all did Natalie's nails, giggled, and talked while hanging out with Nat. During Nancy's shift (2:30-6:30pm) she got right up next to Natalie upon arrival which is what she's been doing and NATALIE HUGGED HER MOTHER! Nancy choked up as she told me and I suspect that was the best hug Nancy ever got! Now Tom is with Natalie again until bed time. Nancy is off to see "Cloverleaf" tonight. Natalie's cousin, Margot's movie that was just released. As Nancy says, so many silver linings!
With Love,
Becka

Saturday Jan 19th 1:51pm

Now that Natalie is in rehab, she has a very tight schedule of therapists, all coming to her room.

First she sees the OT for morning routines like dressing, brushing her teeth, combing her hair, etc. which now they are doing for her but eventually she will learn to do.(Nancy bought some loose fitting warmups for her to wear.) The routine, the repetition and the stimulation, is very important.

After this, the PT comes in to work with her on movement which Nancy says involves a lot of stretching. They stretch her many different ways. They are trying to get her to begin to sit up on her own (just like a baby first learns.)

Then the Speech therapist comes in. They are asking her to make the "Ah" sound which she has done a couple of times. At this stage, it is important for her recovery that she hears her own voice. She will continue to have the trach, but she is going to be refitted for a smaller one. The trach does not prevent her from speaking. (It is necessary for her to still have a feeding tube in the stomach because physically she is not ready for properly swallowing food.)

At night she is given ambien to sleep and during the day she takes ritalin, again for the day/night routine.

This stage or level she is in now is called the "amnesia level" because she won't remember much of any of this. She has communicated that she is in pain by nodding her head when they ask her, but fortunately she will not remember the pain later on. The next level will be the "agitation/confusion level." They have told Nancy to develop a "thick skin" for this level because it can be hard to take. The neuropsychologists and staff can use a combination of medication and pschotherapy with her as she adjusts to learning what has happened.

They have been telling Natalie all along that she was in a car accident and she is in the hospital. It is too soon to tell her about being blind. Nancy says they recommend to wait until she asks, and even then, the clinician or neuropsychologist might be the one to tell her. In any case, Nancy knows how important it is that she and Tom try to remain calm and confident in Natalie. For now, when they come in the room they tell her they are there and they have come to see her in the hospital and that she is progressing, etc. Nancy says that sometimes she gets very close to Natalie physically so she can feel her and smell her. At this point, Natalie is doing a lot of tactile sensory things. Of course, hearing familiar voices is important. They do not know how long her memory is holding on to information, so everything gets repeated. As we said before, she will be at the KU rehab for about seven weeks, and then in outpatient rehab after that for 6 months to a year. There will continue to be a lot of "unknowns". Nancy said she has heard the words, "I don't know" so many times.

Yesterday they spilled some water onto Natalie's chest and she took the towel in her hand to clean it up herself.

While I was talking to Nancy this morning for the update, there was a huge hawk flying around in the woods in my backyard as the snow was falling. I told Nancy about it and she said that could be a sign of her "Natalie bird," a name she affectionately calls Natalie. We got a good laugh out of that one. Nancy and Tom continue to be encouraged with every step Natalie takes!

Thursday Jan,17th 8:14pm

The big news today is that Natalie moved out of her hospital room and into rehab. Since she is medically stable, there was no reason to keep her in a hospital room any longer.

They continue the process of working with Natalie to make her brain more and more alert. Nancy said she is pleased with the facility so far. The staff seem loving and very competent. Tomorrow Nancy is supposed to bring in some of Natalie's clothes because at some point they will teach her how to dress herself. Nancy said it is amazing to watch, like a child learning how to do things, but she learns much faster than a child.

Nancy also said it is very comfortable staying at KU for the rehab. Someone asked Tom in the hallway if he were Mr. Schneider and then told him where to find Natalie. It is a huge hospital, but they feel at home there.

Some of the tasks today were putting chapstick on her own lips and rubbing her hands together with lotion. Nancy said she really admires Natalie's strength of character in wanting to progress and working so hard. Laura said they were all excited that Natalie is doing so well. Nancy, Tom and Laura were having dinner at Tom's hotel tonight.

So many people are behind Natalie! Every step is another miracle!

Love,
Susan

8:15pm Central Time
Wednesday, January 16, 2008

Nancy called to ask me to do the update tonight because Susan's computer is not working. I'm happy to have the opportunity to help with today's Natalie News.

Tom went by the hospital before work this morning to spend some time with Natalie which is becoming his routine. He takes familiar things to her.
Today when he handed her car keys to her she seemed to recognize them and
began to push the buttons. She sat up in the Cardiac Chair today for 3
hours which is one of the exercises she will begin doing in rehab. The OT & PT both said she balanced herself while holding onto the railing in a
sitting position in bed. Natalie will move to Rehab on the 3rd floor at KU
Med on Friday since she is now "medically stable". She will be there for approximately 7 weeks after which she will do outpatient and day patient rehabilitation. It is a good facility, close to her doctors for quick answers and responses and easy sharing of information. It will be convenient for the family to help with her recovery and an easy transition for Natalie. She will also be close to Tom and Nancy and they feel like she is really responding well to them. For now it seems the best option. Nancy would like to thank incredible sister, Liz, for her extensive research on rehab and facilities. (Nancy, you'd better watch out.before long the docs will be asking if you're Liz's sister!) Natalie's broken foot has healed so her boot has been removed. She still has a blood clot in her leg, but the docs are not concerned and think it will go away. She also still has a "shield around her heart" to avoid a clot or stroke, but that is unlikely now. Laura returns to Mizzou this weekend and Max will return home for a visit on the 25th. Sister, Cynthia, will be coming on February 5th for several days. Nancy would like to say a special thanks to Rhonda Trosen for organizing the wonderful meals. After a long day at the hospital it is so comforting to have food waiting at home. All who have contributed in so many ways mean the world to Nancy and to her far flung family members. I remember saying to so many friends who called just after the accident that once we all returned to our various homes that was when Nancy would need them the most. She is blessed with fantastic people who mirror her
generosity of spirit and we family members thank you! Lastly, Nancy wanted
me to mention cousin, Stephen and how much she appreciates his help and support through all of this.

Good night, Natalie. Good night, Nancy & Tom. Stay safe, Laura, Derek, and Max! Peace to you all.

And Happy Birthday, Grandmamma!

Love, Becka

Tuesday Jan 15th

The report tonight comes mostly from Laura. She says Natalie is in her new room and she already received flowers from the "Saunders cousins." How wonderful! She says it is very different without all the machines etc. in ICU. But her room is bigger and has a window. They really appreciated the excellent nurses in ICU and are hoping for this quality care to continue. Laura and Nancy did a self-guided tour of the rehab area at KU, trying to evaluate the pros and cons of this facility compared to another one in Kansas City but not a KU. This other facility is more beautiful in terms of buildings but has the disadvantage of having to transport Natalie back to KU for doctor visits, etc. Plus it doesn't have the "CRAF" Certification.

The main reason Laura wanted to offer today's news was to report how strongly Natalie responds to Tom. She says it is really amazing to watch. Tom told Natalie to smile and Laura said you could see her lips move and the beginning of a smile. She says it is mostly Natalie's left side that moves the most.

Laura leaves this weekend to go back to school but she is just 1 1/2 hours a way from Blue Springs. Max is coming home from Auburn this weekend. He is escorting Laura to her sorority formal on Friday night in Columbia and spending the rest of the weekend with Natalie and Nancy and Tom. Nancy said she told the kids they can come home when they want, especially this semester.

Nancy recognizes the many gifts and ways of caring that have come about. She called back again to marvel at the fact that now two friends of the family have put prayer notes about Natalie in the Western Wall in Jerusalem!!

Sunday, Jan 13th 5:28pm

Tom said today was a good day for Natalie. He spent 3 hours alone with her this morning and she was moving quite a bit. When he asked her to smile for him, she did her best to comply. Some baby steps forward today.

Laura and Nancy visited later in the day and Nancy said Natalie was moving so much it was like she was trying to "rope a cow." In other words, big movements. Also, when Nancy spoke Natalie rolled her head toward Nancy to listen. Natalie got a manicure from Nancy's friend Ginger. Also, Natalie was using her hands to manipulate a stuffed polar bear the nurses gave her. More stimulation, more movements.

Nancy and Laura have gone to church tonight. Laura has one more week before she goes back to Columbia.

This week Nancy will begin checking into the different rehab centers. Also, she mentioned checking with Natalie's audiologist to get that information as well. Natalie's move out of ICU is any day now. They didn't want to move her today because she had some phlegm that they needed to remove. Her fever has gone.

Everybody got their hugs today, Nancy, Dr. Barefoot and even Tom when he mistook a nurse for Laura. Nancy was proud to share that on Natalie's My Space website she lists her Mom and Dad as her heros!!

Love, Susan

Saturday, Jan 12th 5:50pm

I just wanted to clarify her being awake. She is beginning to wake up. She is not totally alert. We are praying she will continue on coming back to us.

I want to thank the Tillman family for placing a recovery prayer in between the stones of the western or Wailing Wall in Jerusalem. We are blessed to have so many praying for us.

Love to all from The Schneider

Saturday, Jan12th 3:15pm

Natalie has not gotten her marching orders to go to a hospital room yet. But Nancy and Tom are in good spirits with friends at the hospital and lots of support. Derek made 4 new CDs for Nat, so as Nancy says ICU is hopping with rap music this weekend. Ashley and Lindsay are there again today, such devoted friends to Natalie. Also Laura is back from skiing and some of her school friends are at the hospital too.

Tom said Natalie's responses today and yesterday have been a little less than the previous days. It is the two steps forward one step backwards theory. Plus Nancy says the PT and OT are not around on the weekend so Natalie is resting more. She did follow Laura's command to give her the bird (middle finger) twice yesterday. Everyone got a big chuckle about that one. She does have a slight fever again today and that is not a big concern.Tom also said she is still pulling at the moisture shield band around her neck. Overall, she is resting more this weekend.

Max is back at Auburn studying for the exams he missed in December. Derek is making the 13 hour drive today back to Baton Rouge. Laura has a about one more week at home.

One final thing, Nancy said Dr. Barefoot told her this time he was ready for his daily hug, before she had a chance.
Love,
Susan

Thursday, Jan 10th 4:29pm

NATALIE IS OFFICIALLY AWAKE!!!

She is not alert yet, but she is awake! That is the word from Dr. Barefoot today. And, all the indicators show she is stable enough to be moved out of ICU. Saturday she will be moved to a regular hospital room!! Nancy could not wait to tell this wonderful news! She and Tom are so glad that Natalie has progressed to this next major step.

As has been explained, once Natalie could follow physical commands, especially ones that required reaching past the midsection of her body, she would be considered awake. Over the past few days Natalie has done all of that. She will only be in a hospital room for about 10 days and then she will move to a rehab center. They are anxious to get her in a rehab center as soon as they can so she can make more and more progress.

Nancy has been reminded (and amused) in these past few days that Natalie is her own person and she does it her way. For instance, she has tried repeadtedly to take the heart monitor off her index finger. She also was lifting up her hip like she was trying to get out of the chair. This strong will is working for her as the movements are very positive steps. She is doing so well that she has breathed on her own for 48 hours now. All the wires have been taken off her teeth. She is making a "snoring sound" which Nancy says probably indicates her voice box is in good shape. And she keeps tapping her foot.

Natalie's hospital room will be close to the nurses station. Nancy says she will probably spend more time at the hospital, but she will need to evaluate it as she goes, one day at a time. The main thing is, she is awake and stable. Nancy's optimisim and grateful attitude are guiding her.

Love and kisses,
Susan

Wednesday, Jan 9th, 10:15pm

Natalie continues to follow the commands. Today, the occupational therapist told her to hold up two fingers and she did. Then she told her to hold up five fingers and she did. How convincing is that! And she did this while sitting up. Nancy says she is lifting up her foot and her leg almost like she is trying to get up and walk.

Other progress includes breathing on her own for 36 hours. She is given a trach shield to keep the moisture in her throatand she will likely keep the trach for several months.

Nancy and Tom are starting to look at the different rehab facilities available. They were given a list of 5 in the area to chose from. Other family members are starting to help with this research as well.

Nancy was thrilled to know that Natalie's speech therapist went to Natalie's high school, Blue Springs. In fact, the young woman she requested that she work with Natalie. These personal connections give them an added feeling of comfort and support.

Nancy is so proud of Natalie's website. She is amazed with the numbers of people reading it and responding in such caring ways. It means so much. Nancy says out of this tragedy has come many positives, and as Natalie improves they just feel so thankful.

Love,
Susan

Tuesday, January 8th 5:19pm

Nancy says now she believes in miracles! Natalie continues to make progress in responding!! In addition to yesterday's movements like wiggling her toes and making a fist, today she raised her knee and reached across the midline of her body with her arm!! She even did a (modified??) thumbs up after a few minutes of really working at it. Nancy says Natalie is clearly working very hard to respond to the commands.

Nancy is so thrilled with Natalie's progress that when she ran into one of her docs in the hallway she almost tackled him with a gigantic hug. This Dr. Barefoot (not his real name - but the one Nancy has been using) didn't know what hit him, and he is much shorter than Nancy. They are accustomed to Nancy's hugs around there.

As Natalie readies for rehab and advances in her recovery, she is at the point now where they can wash her hair, trim her nails etc, more things to do to stimulate her. Nancy and Tom were dealing with the legal disability issues in the morning, but when Nancy got to ICU several nurses and friends were combing and styling Natalie's hair. Also, the physical therapist and occupational therapist came in, sat Natalie up, and did an initial assessment.

As a minor issue, Natalie has a blood clot in her leg which is being addressed with blood thinners which she is now able to take. She has other internal "screeens" to prevent clotting, common after the surgeries and trauma she has been through.

Natalie's friend Lindsay was going to be with Natalie around 5:30 and then Tom was coming in after that. Even though the recovery process can be very long as they have said from the beginning, now we know Natalie is with us!
Incredible! As Nancy says, a miracle!

Love,
Susan

Monday, January 7th 7:44pm

Dear Family,
Nancy said today was a good day! Natalie was clearly following commands and the doctor said to Nancy after finishing his rounds that "We are ready for rehab." And he also said, "she looks good." Rehab is the next phase once she is released from ICU. This is great news!

Of course, Nancy said tomorrow she might not demonstrate as much progress as she did today but some significant markers have been set. Go Natalie! Nancy said she couldn't be more proud of her!!!

The ritalin protocol mentioned before is definitely being administered now. At this point she is ready for this kind of stimulant.

Nancy plans to continue to be at the hospital when the doctor is doing his rounds in the morning and also to be with Natalie soon after the ritalin is administered so she can keep working with her to stimulate her.

The commands Natalie followed were wiggling her toes, making a fist and making a flat hand, also moving her lips like she was trying to talk, swallowing, yawning, etc. Although these are "baby steps" Nancy said that because she is doing these things it is "time to start thinking of rehab." She also grimaced at one point.

They asked Natalie to do the "thumbs up" and Nancy said you could see her trying.

She continues to perform excellently on all the trials with the respirator. Today she was breathing for four hours with no problem. The tracheatomy is the last thing to come out, and she could go to rehab with it, according to Nancy.

Nancy said the midsection abdominal scar from the initial surgery to check for organ damage is healing nicely.

Spirits were high today. The nurses were excited and Nancy was a proud Mom. One day at a time, and this was a good one!!! Go Natalie!

Love,
Susan

Monday, January 7th 11:04am

I spoke with Nancy this morning and she said she has posted a note on the website for yesterday's update. She said it was another opportunity to thank everyone for all the support.

She said the neurosurgeon, Dr. Haynes, said yesterday when she saw him that when they did the cosmetic facial and sinus surgery they looked at (not touched) Natalie's brain and he was surprised to see the "dura" (fibrous tissue that holds the brain in place) was in better shape than he thought. Also, he thought the right frontal and temporal (most damaged) didn't look as damaged as he thought. Nancy says she doesn't know what that means exactly but it could be good news. Time will tell.

Also, Nancy says that since Natalie was breathing on her own right after the accident and that she never went into cardiac arrest, that is a good sign.

They are really doing a lot of "day time" stimulation now. The nurses are bathing her in the morning and sitting her up all day. Nancy and her visitors are doing things like putting on lotion, listening to music and singing to her, watching football games in her room...and then at night they turn of the lights etc. so she can get accustomed to day/night schedules.

Nancy says she is wiggling her toes and her hands a little; she "trys to move her lips" a little; squeezes your hand (Nancy says this could be reflexive) ....

They say when she gives a "thumbs up" with her hand will be the key when they know she is awake.

Also, Nancy mentioned that she is not sure Natalie is still getting the ritalin stimulant any more. It may not have worked so now they are trying something else. Nancy is inquiring about this. She says they follow a certain protocol.

As a nice diversion, they are all looking forward to the big championship game tonight with LSU. Max will hopefully watch with Grandad in Birmingham and Derek is watching with some friends at home. Go Tigers!

Nancy is working very had to focus on one day at a time.

Love,
Susan

Sunday, January 6th, 2008;
10:44 PM

Dear Friends:

I just spoke to the nurse to see how Nat’s night is going. She said she had a good day. She had lots of visitors who have helped to stimulate her to wake her up. She hasn’t yet but we have high hopes she will be back to us soon.

In the meantime she has been off the ventilator for 4 hours today with just a shield over her traque to keep her lungs moist. She sat up for a long time in her heart chair. They want her to recognize night and day much like they had to do as babies so they want her stimulated during the day and resting at night.

Max leaves in the morning, early to go back to Auburn. He has been such a man through all of this. I am so proud of the person he is becoming. Laura should be on the slopes early in the morning skiing in Winter Park. Derek promises me he will be my rock next week.

We are so blessed to have such a wonderful support system. Even our best man and his wife flew in from Palm Springs to help support us through these awful times. So thanks for being there and come see us at KU med.

Love to all,
Nancy

Saturday, January 5th, 2008

I spoke to Nancy around 6pm and she was at home fixing some dinner rather quickly because she said she had a headache. She sounded better today than yesterday, however, and planned to go to bed early.

Natalie's progress today had mostly to do with the fact that she was completely breathing on her own for about an hour. This may seem like a contradiction, but the breathing on her own before today was in fact assisted minimally by a back-up ventilator. This is a big step.

In an effort to provide stimulation, Nancy took some music Natalie would like into her ICU room. Nancy said the nurses etc. were very nice about it. She will continue to think of ways to stimulate Natalie to get her to respond.

Nancy, in her caring way, had reached out to another family in the waiting area, a woman who she said was really great. Uunfortunately, that family received sad news today about their loved one which made Nancy sad too.

On a brighter note, the kids and Nancy had fun watching Max's close high school, Darius, on TV competing in football for Ball State. He scored two touchdowns Nancy said.

Laura is driving to Colorado with her friends tonight, but Nancy says the roads are clear and the weather is good. I think she is glad Laura can get away for a few days with her friends.

Love,
Susan

Friday, December 4, 2008

I spoke with Nancy around 7pm tonight and she and Laura were leaving the hospital. Laura is going skiing tomorrow with her sorority in Colorado for a few days. Nancy was really encouraging Laura to make the trip. Laura especially wanted to have some quality time with Natalie before she left. Nancy said that Natalie squeezed Laura's hand today again. She said they are cautious about putting too much importance on this. Nancy said the doctors reminded her that they needed to look at the progress she makes over the course of several days.

The most important thing now is that Natalie wakes up. They continue to do things to stimulate her. Today they put her in a special kind of chair for several hours to stimulate her and also to get her to use the muscles that might be atrophying in her back, etc. She continues to breathe on her own for several hours at a time, and Nancy also mentioning she is swallowing small amounts of saliva as well.

Nancy was a bit surprised to see that Natalie's hair was shaved back to the crown, something that needed to be done for the recent facial surgery. Her fever was gone, but now she has a minor infection in her mouth which the antibiotics that she already takes will target. Her face was swollen from the surgery as well.

Max returns to school on Monday. Derek goes back a week from Sunday and Laura has about another week as well. Nancy says when they all leave she will have only one week alone before Cynthia arrives in February, something to look forward to. This Sunday Tom's best man in his wedding and one of their closest friends and his wife are flying in from Arizona to spend some time with Tom and the family. Nancy says that will be great for Tom.

Nancy says everyone is really worn out, but they continue to be optimistic and taking one day at a time. Last night's dinner was KFC which some nice friend arranged. Nancy says her friends have been wonderful.

Love,
Susan

Nancy says they are all worn out but are taking it day by day and remain optimistic.

Natalie update, Thursday, January 3, 2008, 7:43 PM CST

What a day...

Nancy got the news this morning that Natalie had 102 fever. She was very worried because the docs had told her that the only thing that was life threatening for Natalie now was an infection they couldn't control...

She spent anxious, frustrating time at the hospital unable to get answers; why was Natalie just on Tylenol? Couldn't they give her something stronger? Nancy insisted and they gave Natalie Motrin. Meanwhile more waiting... the doctors were doing rounds...the case manager was handling another trauma...

Finally the doctors came to see Natalie - the main doctor and a bunch of interns. The doctor ordered a cooling bed, turned down the temp in the room and ordered ice towels to put around her face to help bring down the fever. After all the hours of worry, they told her that they would have been surprised had she NOT had a fever after the surgery yesterday, and with a brain injury like this.

One of the staples from her abdominal surgery opened, but they are not concerned and plan to leave it open expecting it will simply heal from inside out.

And finally, late in the day, the fever was gone. All Nancy could think was thank you God.

The doc had also told Nancy that Natalie needs to wake up. The longer she's like this, the less likely it is that she will come back - and the harder it will be for her to recover. To get her to wake up they have her off all but a little pain meds, and they are giving her Ritalin and insulin to stimulate her to wake up.

This evening Natalie started moving her feet and toes a little... her hands a little... an arm. Nancy, as she's done since the beginning, was talking to Natalie, calling her, and asking her to respond. The nurse told her that she could see if Natalie could hear her by putting 2 fingers into Natalie's palm and asking her to squeeze...so Nancy did...

Natalie squeezed her fingers. Hard. On Nancy's command. The nurse saw it too and they were so excited they called the other nurses in.

When Nancy asked Natalie to respond again, there was a delay and then Natalie moved a bit.... was it a response to command this time? Or just random movement? It didn't matter. There was no question that she had responded the first time. And once again, hope springs forth...

As Nancy said...(the understatement of the year) a day in the life at SICU (surgical intensive care unit).

Cynthia

Natalie update for Wednesday, January 2, 2008, 7:07 PM CST.

It has been a long and grueling day of waiting, but with a good outcome. Natalie endured the surgery and, for the most part, they were able to rebuild her face.

Early this morning Tom had to sign the inevitable consent forms which warn of every possible horrific contingency - this, of course, started the day at a fever pitch of anxiety for all of them.

Now that Natalie is out of surgery and in recovery, the ordeal has left the family so wrung out that some details are unclear. There will be more information to come in the days and weeks ahead, but for now they are simply raw and numb and struggling to go on. Still, there was a wave of relief simply that she survived the surgery, and that the doctor was "pleased" with how it went.

The surgeon was a maxofacial/ENT doc so the focus today was not the brain, but the extensive damage to the bones and structure of Natalie's upper face where she took the brunt of the blow (at the bridge of the nose). Having wired the lower jaw shut in the previous surgery helped, and this time they worked on the upper jaw, cheekbones, eye socket rims, nose, and sinus cavities. The bridge of the nose had to be recreated from other bones (not sure from where, but something in her head), and her eyes will remain farther apart than they were. They had to do a craniectomy (remove a portion of the skull) to work on the sinuses (I think), some of which they were able to flush out and repair, some of which had to be removed (this, too, was a bit unclear). The concern was to prevent infection. The piece of skull was then replaced. The doctor was pleased also that there was no evidence of spinal fluid leakage.

It will take 8-10 days to recover from the effects of this surgery, and currently the doctor doesn't know if he will have to do more operations on her face.

As always, the family was eager to know if this surgery provided any additional information about her brain status, but it didn't - the focus being on the facial structure. In a week or so, after Natalie has had some time to recover from this operation, the Neurologist/Neurosurgeon will do an EEG, and other tests for brain activity, but they reminded the Schneider's that Natalie being able to breathe on her own was an indication of some activity.

They are all exhausted and the weeks of stress and worry are beginning to take a toll. Nancy said she had never seen her strong, ever-stoic Tom so distressed in all their 24 years of marriage. Somehow they are still doing what they have to do. God bless them all.

Cynthia

Natalie update - Monday, December 31, 2007; 9:31pm

New Year's Eve...evaluation and hope for the New Year. Natalie breathed on her own for 24 hours, and in that sense is continuing to improve. She remains off sedation, but on pain meds. The question from many has been, why doesn't she wake up, but the doctors tell Nancy to be patient. The brain is uncharted territory and every case is different.

Nancy and Tom continue to take care of the "business" of all this as well as being there for their daughter. They obtained legal guardianship for Natalie today, so they can make necessary decisions on her behalf.

The family is taking some much needed time for themselves tonight. Nancy and Tom will see friends briefly. Max, Derek, and Laura have all gone separate ways with friends to celebrate, all in safe circumstances with no driving involved. I applaud Nancy and Tom for urging their other children to go on with their own lives as much as possible. Life is often revealed at its most treasured in the face of tragedy.

Wednesday morning at 7:30 AM Natalie will have an extensive 12 hour surgery to repair her broken and damaged face. Progress.

In the days and weeks ahead there may be less than daily updates. Certainly, anything of note will be posted, but progress and events are moving more slowly now.

The family remains so very grateful for the notes, calls, and support. And we all look to a good new year from them and their beloved daughter/sister.

Cynthia

Sunday, December 30, 2007, 8:19 PM CST

I spoke to Nancy this morning before she and Laura went to church.

Natalie was taken off drugs yesterday for a few hours, including pain meds, to see what her response might be. There wasn’t as much as Nancy hoped for, but the docs say every brain injury is different, and every day is different. There are, and will be, good days and bad. Two steps forward and one step back. The Schneider’s continue to reach for optimism…

The focus now will be on Natalie waking up, and the healing of the brain injury. It will take whatever time it takes, but there is a plan: gradual weaning of meds and respirator. The rest of her wounded body is healing well.

I asked Nancy why she spent so much time at the hospital – much of it sitting in a waiting room with other families dealing with family tragedies, with Natalie was being well cared for, and unaware of her family’s presence. She said there will be a time when her life moves on, but for now, she can’t imagine going on with her life when Natalie can’t go on with hers. She does what she needs to do in her life, and leaves the rest. With a Nancy-laugh, she said her kitchen was a mess until yesterday when one of her fabulous friends came over and cleaned it up.

Don’t you know Natalie will be floored by all the love and support from so many people?! I hope it will embrace her and give her strength and inspiration in the long road ahead.

Cynthia

I am sitting here in the waiting room trying to get something done. I am amazed at how Lethargic I am. I just lay in bed when I am home and sleep as much as possible.

Nat is back in the SICU trying to wake up. They have taken her off sedation for good, are weaning her of her pain meds and hoping for her to wake up. I am going to go back and see her.

I am so lucky to have such wonderful support and want to hear from everyone. Take care of yourselves, buckle your seat belts and drive careful.

I love you all,

Nancy

Natalie update, Saturday, December 29, 2007, 9:19 PM CST

I don't have an official update from this evening, but I spoke to Nancy this morning. I am in awe of her courage and determination. She struggles with her grief for her baby, but pulls herself together to think of the next tasks Natalie and the family will face.

Max left this morning to join Tom and Derek in Conroe to pack up Natalie's house. A heartbreaking - and back breaking - job.

Nancy and Tom continue to examine what resources they may be able to call on to help Natalie in the long road ahead, and Nancy, somehow, continues her resolve and optimism.

(a note: I speak to Nancy the most, so I write most often from her information and point of view, but all the Schneider's - every one of them - have shown remarkable courage and pitch in wherever they can, and how ever they can, for each other. And for their sister and daughter.)

Cynthia

Natalie update, Friday, December 28, 2007, 5:22 PM CST

I try to remain somewhat stoic in these updates, but today is a day for heartbreak. Natalie’s surgery did not go well. She lost her other eye. I don’t even remember the specifics of the surgery now and I only spoke to Nancy moments ago… all I know is that Natalie will wake up in the dark, and my heart breaks for her and her family.

There is a movie out now called “The Diving Bell and the Butterfly” about a man who has suffered a terrible brain injury. We hear his thoughts – first the despair – then the will to go on. He eventually discovers that he is only limited by his imagination. I know first hand that you can go many places, “see” many things, and live much in your imagination. We will have to help Natalie find her “sight” in that vast and wondrous place.

Mamma used to tell us Saunders girls that God doesn’t put anything on you that you can’t bear. I wonder if this is included…

Cynthia

Natalie update, Thursday, December 27, 2007, 8 PM CST

Natalie was off the respirator for 6 hours today, so she is continuing to be weaned successfully. She remains mostly off sedatives, but remains on pain meds. Nancy spent a lot of time with her, just talking to her and holding her hand, but became unnerved a bit with the heart monitor beeping. An alarm was going off that indicated a high or “racing” heart rate. The medical staff assured her that this is common for patients with head injuries, but it persisted enough that they put Natalie on Beta Blockers to control it. Even that, though, they say is common.

Tomorrow at noon they will begin the next eye surgery referred to in yesterday’s update. Nancy has great confidence in the surgeon. They are all so very grateful for the expertise and kindness of all the medical staff at KU Medical Center.

Tomorrow Tom, Max, and Derek will go to Conroe, Texas, to move Natalie’s things out of her house and get it in shape to rent. They will be renting a truck to drive her things back and expect to get all this done and be back by the New Year.

The Schneider’s continue to lean on each other and their friends and families and to give each other strength. They know they will need it as the reality of the long road ahead descends.

Hold them in your hearts and prayers.

Cynthia

December 26, 2007 6:00pm CST

Nancy called me tonight for our daily update on Natalie's progress. Nancy encourages all to send Notes to Natalie on the website because tomorrow she will take her laptop into ICU and read all the Notes to her. They let her hear Maximus bark on the phone today and will take her some music tomorrow.

Natalie was off the ventilator for 4 hours this morning and they will continue to increase the amount of time each day until she can completely breathe on her own. We are still unsure if her frequent movements are reflexive or more.
According to the docs if she reaches across her center line more brain activity is indicated. She is moving her left side some, but not as much as her right.
Natalie's next eye surgery is now scheduled for noon on Friday. A cornea specialist from Iowa who is "as good as Stephen Slade" will attempt to use a plastic "window" to view the retina tissue and the optic nerve. They will attempt to do a cornea transplant. They've done an ultrasound on her eye and see thicker areas around that damage, but her eye is still holding good pressure.

Nancy says that cousin/auntie Jean is leaving tomorrow with David, her husband, who has come to help her return to Austin. She has appreciated Jean's help, comfort, and friendship. Jean was the first family member to arrive after the accident. We all thank you, Jean!

Nancy & Tom are getting into a routine with Tom starting his day early at the hospital. Nancy arrives by late morning and stays until Tom returns after work to say goodnight.

They've been told to rest and prepare for the long haul when we hope Natalie will move out of ICU. Once in her own room they will need to be more vigilant and close-by to be sure she's getting the best of care.

Goodnight, sweet Natalie.
Aunt Becka

Natalie update, Tuesday, December 25, 2007, 8:24 PM CST

Nancy, Tom, Max, Laura, and Derek had a special Christmas with Natalie at the hospital this morning. The best gift was that Natalie breathed on her own today for 2 whole hours! And there was the moment when it seemed she wouldn’t let go of Tom’s hand…

When the respirator was turned off, a respiratory therapist watched Natalie’s blood pressure and pulse closely for signs of distress, but all was well. They will continue to increase the time off the respirator in the days ahead.

After their time with Natalie, the Schneider’s went home and celebrated Christmas together.

Nancy put a picture of Natalie on the sofa where she usually sits…

Cynthia

Natalie update, Christmas Eve, December 24, 2007, 5:27 PM CST

Natalie had eye surgery today. Doctors told Nancy the surgery could be 45 min to 4 hours and it was closer to 45 min. The good news is that the eye has stopped leaking and is holding pressure. They cleaned the debris out of the good eye and restitched it. They still can't see behind the Cornea. They are going to let the eye heal from this surgery and continue to monitor eye pressure. Nancy seems to think there will be several more eye surgeries. On the next eye operation, Nancy thinks after the first of the year, they are going to get a Cornea Specialist. He will cut off the cornea, put in a temporary plastic prosthesis during surgery then take out the prosthesis and do a cornea transplant. We still don't know if Natalie will see.

Stephen is in constant contact with Natalie's eye doctors. Stephen says that one future option is that Natalie is a candidate for sight with a camera.

The ICU nurses were excited that Natalie moved her right hand, arm & leg and that she is flinching when in pain. Nancy also told me that Natalie grabbed Nancy's hand and she recognizes Nancy's voice.

Brian has gone home.
Jean got sick from taking her meds on an empty stomach & is getting tired.
Jean's David is coming the day after Christmas, will spend a few days, and then will take Jean home.
Nancy & Jean were at Nancy's house when I called.
Tom's sister, Charlene, & Laura were at the hospital.
Tom's family (George & Charlene) will be with them on Christmas.

Nancy & Tom are trying to handle the business of Guardianship of Natalie and insurance.

Nancy also said that Rachel wrote an amazing note on Natalie's web site. She was so very impressed. Also Nancy said she really enjoyed Brian being there.

I told Nancy she was not alone on Christmas. In addition to her family and friends that were there we are there with her in spirit.

Love, Sarah

Natalie update, Sunday, December 23, 2007, 7:41 PM CST

Christmas is seen by many as a time of miracles... Nancy and Laura went to church together today. Nancy says Laura gives her incredible strength, and like all the Schneiders, they can't help but hope for a miracle for their Natalie. So many miracles already...

The doctors/nurses continue to cut back Natalie's sedation - and there is increased movement; arms, legs, chest.

Some say they feel Natalie squeeze their hands. Is it their imagination? A Christmas miracle? Only time will tell.

The doctors still plan to operate on Natalie's eye on Christmas eve.

Do more awe inspiring things happen at times like these, or do we simply notice more because of our own heightened awareness during a crisis. Small things... God and earth and nature "speaking" words of comfort:

Tonight Becka walked to the top of the mountain in North Carolina and witnessed a sprawling and spectacular sunset to the west, and a huge, full, silver moon rise from the east.

A few hours later, in California, I walked the trails at the "Top of the World" and witnessed a spectacular sunset over the Pacific, while the same full, silver moon rose from the east.

Neither of us knew it at the time, but we both sent our "good tidings" to the Schneiders.

Cynthia

Natalie update, Saturday, December 22, 2007

Good news…Natalie’s ICP appears to have resolved itself! So much so that they have removed the bolt monitor in her head. The brain swelling is going down and yesterday’s CT scan showed a “widening” of the brain stem which means that there is a good fluid flow between brain and spine – may be too technical, but it’s a good thing.

More good news… no more fever and no more fluid in her lungs.

They are continuing to wean her from the sedative/paralytic drugs, but will keep her on pain meds. They are planning as of now to do the eye surgery on Christmas Eve.

So it’s a day to give thanks… Natalie’s family are staying with her in shifts so they can try to get some other things done too, but they wouldn’t be able to do it all without all the help. They are so very grateful. People bring food. Rachel Powers has been keeping Natalie’s dog, Maximus, since all this started. Friends have even volunteered to wrap their Christmas presents. Everyone is especially moved by the lovely notes everyone is posting on the website.
Cynthia

Natalie update... Friday, December 21, 2007, 7:09 PM CST

Natalie's condition seemed somewhat improved today in the sense that she is maintaining a steady ICP without needing drugs to do it. Let's hope this continues; 3 days at or below 20 is a sign of trauma recovery and will enable them to do the surgeries she needs.

She is also now being treated for pneumonia because the x-rays showed fluid in the bottom of the lungs and she had increased mucus and trouble clearing her lungs. She also has a minor fever.

Meanwhile, they are now reducing the sedative/paralytic drugs she has been on since the accident, to allow her to "arouse". As to how far this will go, and what exactly her response will be, they simply don't know. It's a wait and see situation. A word of caution: as desperate as the family, and all of us, are to know now how Natalie really is, it's important to allow this situation to reveal itself and to not read too much into any response. There are specific neurological tests that can be done on patients to determine the extent of brain injury, but because of the nature of Natalie's injuries, many of these can't be done. Even the term "coma" cannot be used specifically here because of the limitations of their ability to test her. Bottom line: they are reducing her drugs and we'll see what happens - and continue to hope and pray for the best.

On a personal note: as the holidays unfold and families gather to embrace and reconnect, I hope that our gratitude and spirits will overflow and buoy Natalie's spirit too. A special place in heaven is reserved for her loving family who continue to maintain their vigil at her side.

Cynthia

Natalie update, Thursday, December 20, 2007, 7:54 PM CST

Natalie has held her own last night and today with only a couple of spikes in ICP. The pressure remains the primary issue at the moment, and the docs and nurses continue to monitor her constantly. Any further surgeries will wait for 3 full days of steady pressure.

Besides the face surgery, they will do another eye surgery when she stabilizes, hopefully Christmas eve if all goes well. They think now that there may be a bone fragment in the back of her eye.

Daddy and Ann (Natalie’s grandfather and his wife) left today, and Brian Farley, her cousin, arrived from California yesterday. The family continues to be there for each other, spending much of their time at the hospital. Friends continue to call, come by, bring food to the Schneider house, and otherwise provide a much appreciated moral support.

Everyone continues to try to take the medical staff’s advice: be patient…be patient.

Cynthia

Natalie… Wednesday, December 19, 2007, 8:44 PM CST

Today has felt a bit like a setback. Natalie was unable to have the scheduled facial surgery they were hoping/planning to do today because of problems with her ICP (intra cranial pressure).

They hoped/expected that once the 5 day mark had passed, her ICP would stabilize and begin to go down, but it hasn’t, and spiked a few times, going to 50 last night. This is a very unusual situation to happen at this juncture. The neurosurgeon has only seen it twice in 5 years at KU Med center. They have been trying to determine what caused it and have done both an MRI and a CTZ scan. One of these tests revealed a “leak”, and/or fistula in the portion of her carotid artery that is in her head. Believing that this was the cause of the ICP problem, they scheduled her to have an angioplasty (?) to unblock the artery, but it “resolved itself” before they needed to.

The ICP remains an issue of concern. Current treatment includes:

• drugs
• draining the lumbar catheter
  

In addition, they have limited her visitation further and lowered the temperature in her room considerably.

If current treatment does not bring down the ICP, they will have to consider more drastic options including:

• a medically induced coma
• a craniectomy (remove a portion of the skull to allow the brain to expand to increase blow flow and oxygen) (*** I don’t know if this is a craniotomy or decompressive craniectomy – I think the latter.)
  

They hope to do neither – and for now, her pressures are down. Remember, these are “spikes” in pressure, not a constant. They will delay any further surgery until her ICP has been at 20 or lower for 3 days in a row.

REMINDER: Information is often 2nd, 3rd, 4th hand and is sometimes confusing and/or contradictory. For example, I learned this morning that Natalie had had 3 strokes. I am told this evening that that was incorrect; she has had NONE.

What we do know is that she is having ICP problems. The docs don’t know what is causing it, but they’re doing what they can to treat it. She remains in critical condition.

It has been very frustrating for the family because what they most often hear from the doctors is “I don’t know”. This is a brutal waiting game which will continue for an indeterminate time. All we can do is wait and hope and pray for Natalie and her family. Meanwhile, the visits, notes, and calls are of incalculable help to the family’s morale.

-- Cynthia

FROM DEREK @8:30pm:

At the present time we are waiting for the results of the Angiogram. This is so hard. Our minds can only play out the worst case scenarios and make them seem so real. My mind has to remain positive and strong to help Natalie and the rest of my family. I pray for the strength.

Speaking of praying, thank you who have asked God for help. We feel that we are just beginning to experience the power of prayer through all of the miracles that we have had thus far. Our greater community has come to our rescue. We thank you.

We love hearing the kind words of our friends. Natalie would be so proud that people are remembering her. When she wakes up we will let her know just all who cared.

We would also like to thank the school district, Marvel Group, Terri Wible, Annette Seago and Liz, Becka, And Cynthia(my sisters) for being there and making this website work. I would also like to thank Sarah, Susan for coming to help Natalie and of course cousin Jean who stands by my side ready to catch me or any of us if we start to falter. It was also wonderful to have daddy and Ann come, too.

May God bless you all.

Love, Nancy, Tom, Natalie, Max, Derek and Laura

NATALIE UPDATE, Monday, December 17, 2007, 8:13 PM CST

Nancy and family had a detailed meeting with Natalie’s neurosurgeon today. What he basically said was:

• confirmed cerebral injuries to her right temporal lobe and both frontal lobes. Only time will tell what the long term result of the injuries will be.
• Natalie has passed the 5 day mark for the ICP (intercranial Pressure). The doctor is happy with that and believes they can manage the pressure with the manatol and the lumbar drain, and that the skull fractures also help keep the pressure low. He is no longer concerned about this issue.
• We may see other injuries in time, but right now we know the brain is not dead and that she has 85% chance of survival. Whether or not she will talk or walk again we do not know.
• Her main problem remains the brain injury, but her eyes have suffered significant damage. The remaining eye is not holding pressure and eye surgeon has been by to see her. We don't know what they'll do. Best case so far is she will see light and shadow. We'll see what Stephen says about that.
• Her skull fractures are healing.
• Fracture in her leg is healing.
• Her pulmonary condition is good, but she is still on a ventilator which keeps the brain oxygen at a good level.
• Her GI tract is functioning well and her BP okay.
  
• After the accident she did suffer some additional injury to her brain, as a result of a lack of blood flow. Cat scans reveal now that there are parts of her brain that show no density.
• When visiting Natalie, various family members have noted movement on Natalie’s part (ex: when they decrease sedation she has extension movements - flexes her arms, responds to their touch). According to the doctors, this is just indicative of basic brain function, i.e. her reflexes are working and basic motor function is okay, these are not a sign of higher brain function. Bottom line, her brain condition is a WAIT and SEE. We will not know the extent of the damage for 6mos. to a year.
• They removed her brain catheter today and stitched up the opening.
• They still plan to do facial reconstruction on Wednesday if swelling is down. After that they will begin to reduce her sedation, and check reactions to see if she responds to deep pain. They will also begin to wean her off the ventilator.

In the short term, the concern is infections and infarctions and surgeries. They can tell that she is properly sedated, and know she is not in pain because if she were her heart would race.

The family will be making decisions along the way, in consultation with doctors, concerning her care, but nothing life or death. And the doctors will support whatever the family decides.

There is no doubt that she will have permanent injury, but there is no way to know how extensive it will be.

Daddy and Ann arrived today. Nancy was overwhelmed to see him. Liz and Becka return to their respective homes tomorrow. Jean will remain at Nancy’s side indefinitely.

Cynthia

Sunday, December 16, 2007, 9:29 PM CST

Natalie passed the day without much change. Her family and friends kept vigil for most of the day, visiting Natalie, whenever allowed, holding her hand and talking to her. The staff had cleaned her up, washed and braided her hair, and continued their vigil of monitoring her. They have put her on a bed that alternates its inflation from side to side to keep body fluids from settling.

Nancy, Liz, Laura and others went to church tonight.

The Schneider family continues to be so very grateful for all the love and support from family and friends.

Cynthia

Saturday, December 15, 2007, 6:34 PM CST

Natalie spent her 24th birthday with regular visits from her family, constant monitoring by her team of doctors, and “watching” a little basketball. Laura said that the inner cranial pressure seemed to ease a bit with the TV on, and she couldn’t help but wonder if Natalie was “enjoying” the chaos. Laura was also comforted by the fact that, in spite of Natalie’s devastating injuries, Laura could still “see” her sister under all the injuries.

Meanwhile, the family is struggling to come to grips with all this, and terribly anxious to know what this will mean for their sister and daughter. They continue to consult with the medical staff, asking myriad questions, but the fact is, there is not much that they can really know at this point. As the docs have told them, every patient is different and there is no predictable, definitive path of recovery. Still, there have been little things – small movements and responses – that give the family hope. The good news is that Natalie has survived the critical 72 hour mark. But, ongoing, they expect she will have ups and downs, continued tests, including multiple CAT scans a day, and continued monitoring of the pressure on her brain (which they now do by means of a “tube” in her spinal column which also drains excess fluid as it accumulates).

It will be many months before they really know what all this will mean for Natalie and her family. For now, the doctors tailor their treatments to Natalie’s specific condition moment to moment. Among other things, she is bathed once a day; they position her in a sort of reclining position to keep her head above her heart; and occasionally lower her sedation to check for a response.

On Monday, the family will meet with the neurosurgeon to get more information on the status of her brain injuries.

On Wednesday, they still plan to continue surgery to repair her face, but that will depend on swelling, which appears to have gone down.

She will remain in ICU until she is past the risk of infection, the inner cranial pressure is stable, and she can breathe on her own.

The family is holding up, but exhausted, so on advice of doctors, who assure them that Natalie is monitored every moment – and the fact that another snowstorm is forecast for KC tonight – they will go home for some much needed rest.

Cynthia

Friday, December 14, 2007 8PM CST

Natalie was in a car accident early Tuesday morning, December 11, and suffered serious injuries, primarily to her head and face.   Nancy and Tom received the terrible news and went straight to the hospital.   Word went out and within hours family members were on their way to their side.  Natalie’s brother, Max, drove from Auburn, Alabama.  Her brother, Derek, from Baton Rouge, Louisiana, and her sister, Laura, from Columbia, Missouri.  Nancy’s sisters, Sarah, Susan, Liz, and Becka, and their cousin, Jean were on airplanes from their various homes and arrived by that night. 

The first 24 hours were touch and go, but as news spread, prayers and well wishes came in multitudes… and our Natalie hung on.  She had brain swelling, severe injuries to her face, a broken ankle, and other lesser injuries.  By Tuesday night, the doctors determined that they would have to do emergency surgery to try to save her eyes.  She survived that surgery, sadly lost one eye, but they saved the other.

Throughout, they monitored the pressure in her brain, ready to do emergency procedures to relieve that if necessary, but it wasn’t.  Every hour that passed brought needed hope and improved her chances.  And Natalie fought on.

Wednesday brought other needed surgeries: to repair her broken ankle, and begin work to repair the extensive injuries to her face.  She spent most of Wednesday, and into the night, in surgery.  Her ankle and lower face were successfully repaired. 

Some 100 medical staff have been involved in the fight for Natalie’s life, with teams of specialists, and the trauma doctor coordinating it all. 

While Natalie is in surgery, the Schneider family and their extended families wait in the ICU waiting room.  It is, as you would imagine, an emotional and intense time, but the family is holding it - and each other - together.  Nancy edits nothing, every emotion raw and visible as she hugs every doctor, every nurse, and every visitor, and gets them to shake Tom’s hand.  She tells the medical staff that she knows they will save/help/take care of her baby.  Very much a “Nancy” thing to do.  Tom, more stoic and contemplative keeps his feelings private, as he greets people, confers with doctors, and makes sure every one else is taken care of.  The family is overwhelmed, moved, and tremendously grateful to the dozens and dozens of friends who continue to come in a steady stream.  Even if there is bad news, Nancy will only say: my baby is alive.

People have sent food.  The Blue Springs PTA sent a card signed by all its members.  The Marriott Hotel sent boxes of food.  Calls from friends and family continue to pour in.  Prayers have gone out from multiple religions and several states. 

As of this posting, Natalie is holding her own.  They occasionally reduce her sedation to check for response - which she has; the CT scan shows less brain trauma than they had originally thought; she is still on a feeding tube and respirator, but the neurosurgeon has told the family he is “guardedly optimistic”.

Brain injuries are notoriously unpredictable but Natalie has miraculously survived.  Still, there is much ahead.  She will have more extensive and delicate surgery on her face in a week or so; she will remain in ICU for a few more weeks; then some longer time in the hospital; and eventually some time in a rehab facility.  It will be months before they know the complete picture of her injuries.

Meanwhile, Nancy, Tom, Max, Laura, and Derek cling to each other, surrounded by the love and support of their extended family and many friends.  Every note, call, prayer, and gesture of support moves them and fills them with gratitude.  They have spent these days waiting, talking, hanging around and just being there, to be near Natalie and each other, seeing her every chance they get, even though she has remained unconscious throughout.  Even so, it hasn’t been all grim - there has been a lot of reminiscing about Natalie’s life, including some funny stories.

The Schneiders have a long and difficult road ahead, and they will need all our love and support. 

And our Natalie fights on.  Tomorrow she will be 24 years old.

 

 

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