Nov 11 Katie was a little distracted today as she was kept busy with speech therapy (facial muscle massage etc.,her stander,exercises,bath etc and was sort of tired when I got there and read with her. She did not watch me that much and had a return of the secretions and coughing for a while. When Katie is tired she often looks at the ceiling.
She still has about a half dozen brief seizures a day. These can last between 10 to 45 seconds when her arms and legs straighten out and her eyes sort of glaze. Then she snaps out of it and her eyes look around and her left arm starts roaming again. She does get medicine for this and will be seeing Dr Honeycutt for an EEG Tuesday to see if it needs adjusting.
Nov 13 Katie's brother Brandon put on a show that once again got Katie smiling and I happened to be there with the camera. You can see Katie smile spontaneously to the jokes and sounds. It seems she responds immediately and twice you could hear slight sound from her when she was smiling at 6:36 and again at 6:57.
To see Katie smiling relaxes everyone and causes a 180 degree reversal of mood in that house. She was always the source of happiness and cheer. It has been a million years since March 2008 when Katie's laughter was everywhere and the world made sense.
Katie's circulation may becoming an issue as her hands and legs are cold at times even turning a little bluish on her right leg. I felt goosebumps on her arms today. I am hoping we can acquire the Quadriciser soon as this should certainly help with circulation.
We wheeled her into the study room and I played her some videos off this website and for a moment she seemed very alert and interested. I also gave her a singing Santa puppy (photo) and when she first heard it sing she gave us a brief smile and looked at me happily.
Nov 18 Today was my favorite visit ever with Katie since the accident. She just seemed more alert and active and I could be wrong about this but I think she was having fun with me. While reading (paying close attention with eye contact,scanning pictures etc.) her left hand reached over, took the brim of my hat, yanked it off my head and pulled it to the far side of her bed where I couldn't reach. I looked at her face and I swear I saw just an ever so slight smile. Also,she would grab my arm and work her hand down to my hand and hold on tightly.
Thanks Katie for giving me something to cheer me whenever I need it. I can't wait for the stories Katie is going to be telling us and when she finds the amazing place God is preparing her for.
Nov 27 Francis and Leighton of Mema's Attic went to see Katie today and found Katie very alert and active. When in her stander she was holding a rubber ball. Tony asked Katie to smile and right away she obliged. Brandon got her to smile again too. While there Katie dropped the ball and Leighton picked it up holding it in front of Katie. Louise told her if she wanted the ball to just take it. Katie reached out and grabbed it. This happened again a little later and Katie grabbed the ball again. I wish I could have been there to see it.These are miracles in full view. Prayers are being answered. To God be the glory.
Dec 3 Katie is still amazing everyone. Now she has not just reached out and taken the rubber therapy ball from someone when asked to, but has handed it to someone also. When laying in her bed she will sometimes lift her head up and turn it both directions to look at something. This is new, I have not seen her turn her head before like that. It's very hard when upright because her head will fall forward, but she has gravity helping her when lying.
Saturday is CoCoa for Katie day at Grace's Castle. If your ever going to the Anderson Jockey lot this is the weekend. Grace's has new stuff too which make great unique gifts for Christmas. While at Grace's your only a few steps from Mema's Attic and Yard Sale & More. If you want to give more than 50 cents for the CoCoa, that will be perfectly alright.
Dec 10 Katie got her N1H1 flu shot today. While putting her thru her exercise paces I saw her raise her left arm when asked to as they raised her right arm over her head. Then they brought her right down and told Katie to lower her left,which she did right away.I watched Katie turn her head to look at something several times which I have never seen her do so purposefully before. I'd heard she gave someone sort of a 'high-five' and I asked her to do it with me. I think she did it just took a little time.
She was extremely alert when they put her in her wheelchair and I immediately put her to sleep by reading a very boring book (which had looked interesting). I started another book and she started paying attention again but went back to sleep as it was even more boring. (Childrens books can fool you with the covers) After her nap she came wide awake looking around and left arm roving. (PHOTO) Her head came forward several times when I sort of stopped it from going to far and asked her to try to hold it up, which she did for 3 minutes or so before pushing it back to rest. I did see her sort of slightly jerk several times within a couple hours. I can see baby steps forward almost everytime I visit. Thursday Katie goes to Roger C Peace to evaluate if she can qualify for some therapy. Tomorrow is brother Brandon's 10th birthday party. I hope everyone in the house has fun.
Nov 12 We now have a used re-furbished yet like new Quadricizer available to us for just $12,500 including shipping. This will work great and we are suddenly much closer to our goal of getting this into Katie's house. If it's been in your heart to be a part of really helping Katie, please don't wait, we're more than halfway there.
Dec 17 Today Katie and mom got an early Christmas present. We all went to the Center for Family Medicine where Katie was evaluated for additional rehab therapy by Dr. Fatianov. It was important for this good doctor to see for herself some type of physical or emotional response to external stimulus. This has not been observed enough before but today was different. Among some good eye and hand movements we were fortunate enough to have brother Brandon along (photo) who whispered into Katie's ear something that caused her to break out that beautiful smile of hers.
The Doctor has ordered Katie to begin outpatient rehab 2 to 3 times per week at Kidnetics in downtown Greenville. These hour or two sessions will also include pool time which Katie will probably enjoy as well as be a great tool in her recovery. The doctor (of course) said she could make no promises but she thought she could definitely see some room for improvement with Katie.
While with the doctor Katie had another of what we had always thought were brief little seizures. Katie has been getting medicine to help control these. This doctor said that they were not seizures but what you call startles or a startle reflex. It is a rapid response to stimuli.
We are getting closer to our goal of getting Katie the Quadriciser. Everyone says this will be a gigantic tool to help Katie in her daily fight to regain function. I must point out that if you wish to help here please check out the fundraiser page where you can join with all these wonderful people who will know they were an important part in helping to improve the quality of life for a kid Taylors S.C. should be very proud of.
Dec 22 Brought Katie some Christmas gifts tonight and watched as Louise put one in her lap. (singing reindeer in a rocking chair) which needed to be opened before Christmas. It seemed as if Katie was trying to help open it with her left hand.
We got a slight smile from the song 'Grandma got run over by a reindeer'. But when Brandon came home we got the biggest smiles from Katie when she heard his voice and laughter. Tonight Katie would sort of drift. Sometimes you know she's looking at you and intent and sometimes sort of dreaming. Seeing her progress you can only yearn for something to please speed it up. Katie's missing out. We need her back.
Photo courtesy Lynn Doll
Jan 1 Today Katie was very active as far as her left hand grabbing stuff, arms,hats toys, whatever is in reach. Seems as if her left hand helps her sort of understand her surroundings. She will grab the book your reading and familairize herself with it. I told her I couldn't read through her hand and I saw a slight smile just like when her mom is suctioning her trachea she sort of playfully interfers. She moves her head forward more then ever when sitting up where it will drop too far and sort of choke herself. Someone needs to be there as she cannot bring it all the way back up. She will help you if you get it part way back up and ask her to pull it the rest of the way and you give her time to do so.
I think happy and familiar sounds make Katie smile more then anything else. Toys and stuffed animals singing or a doll that giggles (photo) almost always work. She may not look at the source but she hears it and that amazing spirit of hers can't help but respond. I don't know of another with her inner glow and love. I've always known she was one in a million. I challenge anyone to find someone in Katie's situation who is so ready to smile like she is. She is so unique. There should be national news coverage of Katie's amazing story and personna.
I feel this need to point out how tough it is for Katie's mom. For nearly two years it has been a 24 hour a day ordeal to keep up with Katie's needs. Even with help from lpn's and home care people, Katie can never be left alone. It is 24/7 and no time for anything else. The finances are stretched and the stress is unimaginable. There's so much to tend to and worry about every minute. I see it every time I visit and I worry about Lynn's health. Where is Katie if Lynn gets sick? How long can someone survive this grueling constant routine? Please pray for a miracle for the Dolls.
1-06-10 A big day for Katie. We went to The Care Center where she was assessed for what types of appropriate therapies she will start next week. Louise Harris (photo) got to the house at 7 a.m. to help get Katie ready for the trip. A nice 19 degrees outside. I must say that this lady has been a Godsend. She met Lynn way back when her first daughter Lynzie was 5 and started lessons at Louise's dance studio. Later she got to know and love Katie when she started lessons too. I met Louise at the hospital where she was a fixture in the waiting room and then began helping with any and everything she could.
Since then her and Lynn became very close friends and I have watched this lady give an amazing amount of her time and is so devoted to helping Katie. She is always there when something is needed and she is just so good with Katie.
At The Care Center in Powdersville,Deeanne Wright (owner) Liz Ward (OT) and Cheryl Rigdon (speech) started working with and assessing Katie immediately. Their expertise and facilities hold some promise for our girl. They are confident Katie will benefit greatly and the different and new approaches to rehab for her can only be good. I know she's going to love the pool time and she started smiling right away when she was learning to push switches that change the colors of this giant tube of bubbles especially when she could make them turn pink and blue.
It is exciting to think about the improvements Katie may undergo with her new friends at The Care Center and her new Quadriciser conditioning at home which will all start very soon. She has been fighting so hard and so long to get to here. Now new tools and facilities to begin a new year and if it's God's will, a new better quality of life.
We spent about 2 and a half hours at The Care Center and then went to see Katie's neurosurgeon Dr Troup who said he could see improvements since his last visit with her. He asked her for a 'high-five' and in her own special way she gave him one. Also, while waiting I told Katie a joke. I did not change the tone of my voice and right on the punch line Katie gave a big smile. There is no one who can tell me Katie does not understand exactly what is being said. Overall, today was a good day and 2010 should be a better year for Katie Doll.
1-13-10 Things got even tougher today as the lpn who was coming out (although somewhat erratic) to help with Katie with no warning or notice just didn't show up. Her employer said she just found a note that she had quit her job. How considerate.
Katie starts at The Care Center Monday but will only be able to go three times per week at about an hour each due to insurance conflicts. Her pool time will be on Thursdays only. I hope to have photos here from there Monday night. I think she will enjoy it and she makes friends everywhere she goes. She always did.
The big news for me today was I saw her pull her head all the way up from her chin on her chest to completely upright. Lynn said she had seen this but I never have. I had only seen her pull it the rest of the way so to speak. Several times I saw her trying so hard to. Then she pushed my hand away from helping her and did it completely on her own.
It is amazing how much strength Katie has in her left hand. She can slam your arm away if she wants to. I also noticed more eye movement as you can see in the video at bottom of page here.
1-18-09 Katie's first 'session' at The Care Center where they worked some with trying to get her to hold her head up and then standing her when it seemed as if Katie did assist them by pushing on her legs for a split second and possibly straightening her back a little. Then trying to get her to push a button which would start a Hannah Montana song. It is hard to say how well she did with that as she did start the song but wouldn't take her hand off the button when she needed to.
I am so happy to say we reached our goal to buy the quadriciser. I have very high hopes when Katie has this in her bedroom her weight gain will stop and her quality of life will improve. I promise to post videos of her workouts. Thanks everyone who sacrificed because they could not refuse the love in their hearts for Taylors most loving kid ever.
Katie is in the toughest fight anyone could ever engage in. She is trying so hard it's heart wrenching and everyone is just yearning to see improvement.
Jan 21 Katie's Quadriciser arrived today along with it's inventor Larry Bohanan and Senior Executive Michael Boyd who were interested enough in Katie to come all the way from Knoxville to make certain we got it right and Katie would get the maximum benefit from this incredible equipment.
Katie seemed to enjoy it and I believe it will bring about dramatic improvement as she is now able to get a range of exercise that would be nearly impossible even if several people were available to work with her hours a day, which of course cannot happen either. Watching this machine with all it's innovations and it's dozen or so different positional workouts you cannot help but be amazed at the incredible amount of thought and scientific theory employed here.
I am no doctor but I have spent many hours researching TBI in books and the internet and talked with many therapists. Months ago I began to feel that this along with the RMNS could be some of Katie's best chances for coming back to us. I want to say thank you to all those who made it possible by showing such love and generosity for Katie.
I myself have found much joy in doing this website and the fundraising for Katie. She may not be speaking yet but she has been telling me something for quite some time. It is that I have everything you could ever want. I can phone a friend and go to a movie. I can take a hot shower whenever I choose and pick out a favorite shirt. I can sit or stand at will. Wanting material things is a form of slavery. Katie helped get me my freedom.
I can imagine what Katie would tell us if it was possible to ask her what things are really important. I know God is using Katie and listens to everything she Prays. I asked her to pray for me.
Michael Boyd & Larry Bohanan of Quadriciser Corp.
It was certainly a pleasure to meet them. They took much of their time to make all the adjustments until it fit her like a glove. Having this in her bedroom will make it so easy to use it mornings and evenings every single day to get the most from it.
Jan 29 Yesterday Katie got in the water for the first time in almost 2 years. She was so relaxed and loving every minute. Thursdays will be pool time for Katie with all her new friends at The Care Center.
Today I had to agree with Lynn that Katie seems happier. She not only is smiling more but when I saw her today she seemed somehow to be more comfortable. It's very obvious she has much more eye movement which looks more natural and easy like for her.
Also, her therapist said that she was seeing some new muscle tone improvement. The Quadriciser workouts must be contributing even though Katie is starting out slowly as this is all new to her body. Gradually she will get more time each day on this great equipment.
We can all hope that these new sounds are a precursor to some first words. Amazingly no one can give us a clue where Katie is mentally. She obviously still has a sense of humor and intelligence but unless and until she speaks everyone is completely in the dark here. Sometimes, though not always, Katie can take a little while to respond to things. Sometimes she will give you blinks when asked, but sometimes she won't. She will be paying attention to you for a good while yet often she just stares straight ahead. When riding with her in her van I wonder why she is not looking out the window. It will be the greatest day ever if Katie could just tell us. Maybe she will. She has come lightyears since they made her parents plaster casts of her little hands.
Courtesy Lynn Doll
Feb 5 I am certain Katie is overall just feeling better. Her smile comes more frequently and she often gets playfull like when I was reading she puts her hand in your face or on the book just to see your reaction and if it causes you a little grief or you say 'I can't read thru your hand' she gives you that impish little smile almost every time. Lynn said she just loves the pool time and doesn't want to leave it even after 45 minutes. See photo of Lynn sitting Katie up in her bed to see she just seems happier maybe healthier. She was having a lot of coughing/secretions and once she made a continuous sound following a cough that I have never heard before. It lasted 4 or 5 seconds and was as close to vocalizing a word as I have ever heard from her. I did upload a portion of a video
from a dance recital back in '07 which is at the bottom of this page.
Katie is still enjoying her Quadriciser every day with her other therapy
Katie will be turning 12 on.Tuesday Feb 9th. Happy Birthday Katie.
Feb 9 Happy Birthday Katie ! Katie hit the big one two today and Louise got her to help open some presents. She sort of held some corners of the wrapping paper while Louise pulled until it would rip open some. I was hoping all of the sparkly and colors would make Katie smile but she wasn't having a great day today. I never saw her actually look at the gifts on her own she was very tired and sort of stared ahead. Not the happiest birthday party. She had been in her stander and therapy and the Quadriciser as well as having a lot of secretions again. I pray her 13th will be leaps and bounds better than her 12th. She so deserves better. Thanks to those who emailed birthday wishes and thanks Melanie of Germany for the cake photo at right and Louisa of Sweden for the hand drawn portrait at the bottom of this page.
Feb 14 Happy Valentines day and Katie has gotten her new Stander which is much easier to operate as well as having more convenient features like being able to sit easily, and it looks a whole lot more comfortable for her. This even has it's own table and looks to hold her much better than the old wooden one.
Some days are better for Katie than others and I love when she is responsive and not so tired like where she loses interest in what's going on around her. Lately she has been smiling more and happier but not all the time. It seems as if she is right there understanding everything and so attentive. She fights so hard to hold her head up straight. There is some improvement there and Saturday she set her new record time. She smiles right on the punchline of a joke or instantly at some sounds. It seems with that intelligence she could blink for us every time when asked to not just some times and we could establish communications coming from her. I wish there was an expert somewhere that could explain better as to where Katie is at if there is anything more we could be doing. She seems so close and I know has double blinked many times when asked but then she drifts.
The speech therapy is improving her control of her mouth and tongue and perhaps it will soon cause Katie to regain some function there and God willing some actual words in her beautiful voice. They started introducing Katie to some taste (photo) in hopes this will also help. Her more frequent secretions may be caused by the new activities which put more workload on her lungs. Lynn said Katie took a crayon out of her cousins hand and seemed for a minute as if she was trying to draw something but could only move it vertically.
Photo courtesy Melanie
Katie Doll
Condition Updates
Feb 23 Found this old Channel 7 broadcast on VHS tape. Seems like 20 years ago not less than two. Katie's aunt Pam almost lived at the hospital helping every way she could. Her other Aunt Debra with daughter Elizabeth are also in this as well as sister Lynzie.
Lynn said today she is certain all the extra activity is what is causing the more frequent coughing and secretions Katie is having as she doesn't have nearly as much on the day they take off from these. There is more improvement with her holding her head straight up longer as well as a few times when Katie laughed she made more and longer sounds.
On the phone Lynn told me today that she has grown an inch and a half as well as lost a pound in weight. Losing that extra weight she has gained since the accident would be really good. This is the first time we are not gaining! Katie is now 4'11" tall.
It seems as if her left hand is gaining some control too. The RMNS was started back a few days ago for just an hour a day on the left hand. Katie's right side arm and leg are still not responding well, although she did use her right leg to help push herself a few times. Lynn said Katie gave a big smile when I said 'Hey Katie. it's me Tom the peanutguy' when she held the phone to her ear. Knowing her is the greatest thing.
Mar 5 Another huge milestone today as while her mom was playing with her, Katie didn't just make a happy sound during one of her more frequent smiles, but actually broke loose with genuine laughter. As close to words as it gets for the first time in almost two years Lynn said it was just like her regular laugh. How appropriate that her first communication would be with smiles and now laughter. The amazing spirit and fight within this broken body is beginning to shine brighter and stronger because of the love and giving and prayers from so many. One day Katie will want me to post a video of her thanking all of you. She will write the script and of course, be the director.
Yesterday Katie went for her Thursday swim at The Care Center and seems to be enjoying it more and more. Three times a week there and six days a week with time in her stander and her Quadriciser are really pushing her forward. Please pray for Katies mom also. She is just plain maxed out and I hope she can hold up. I wish somehow there was a way we could get together and get her a day off once in a while. I would be afraid to think about the future for Katie if something were to happen to her loving but extremely overworked mother.
Mar 9 Glad I stopped by to see Katie today. I felt like Lynn said a lot of people have said she just somehow looks healthier. I got there as they were getting her into her Quadriciser. Lynn said she had laughed aloud again and I know she enjoys pulling off your hat because as soon as I said 'you got my hat again' we get a nice big smile. She did this three times and once it was a little hard to get my hat back as she tucked it under her arm. I guess I should have let her keep it.
A lot of the time Katie stares off very sadly. It may be she understands more and more. She is still fighting though. I know she enjoys herself in the quadriciser. Sometimes she smiles while in it and doing her workout.
I told her again that I know a ton of people are praying for her and love her so much and that I will be back reading with her again regularly once I can get free from all my hospital stays. I gave her a framed picture of the drawing Louisa from Sweden made of her and sent me and Katie seemed to like it. Her eyes went over it several times. Katie knows she's loved, and that was always important.
March 16 Nothing really new just Katie is still doing her best and going thru the workouts and therapies. She seemed tired probably as they have raised a level of medication which helps to control seizures. It seems to have stopped them for the most part. She used to have brief 10 second or so mild seizures where she would stretch out rigid like and sort of blank. Louise said she is less and less tired each day since they started with it a week ago.
In the video you can see even though tired Katie still finds Brandon's voice funny and we can all usually get her to smile somehow but none as much as her little brother. I saw where even though Brandon was in her yard almost in front of her she was not watching him from the porch where she had a clear view. She will look at things but no one knows how well she can see especially at a distance. Her hearing though is good.
I might add I know things are tough right now finacially. The family is scrimping on everything as they try to make the dollars stretch. The cost to run that big van taking Katie to therapy three times a week takes a lot. It's a 45 minute drive one way. They have almost nothing to work with now.
March 25 I am so sorry I have not been able to get up to see Katie as I am constantly going to the doctors and the hospital for extreme pain they are putting me thru tests trying to find the reason. I go up to Asheville VA. I hope to see Katie real soon and will post a new video here. I need to start back reading with her. I love doing that and always feel a connection with her. I get as much from it as her I have no doubt.
I am so happy I checked my email late tonite just before going to bed to find this beautiful picture from Lynn. I know Lynn won't mind I copy and paste the email here. It's just great news and I feel the same way about Katie. --->
Katie has been all smiles again for the last 2 days. Backing off the Trileptal (for seizures) has really made a big difference. Doubling the medicine was just too much for Katie. But she's back to laughing and very alert the last 2 days. She has been like a different person. Yesterday when her PT was here, we free stood her and Katie's right leg started to shake a little so Amy leaned Katie putting her weight on her right leg, as she did Katie picked up her right foot and put it back down then picked up her left foot and put it back down as if attempting to take steps! She's getting ready! Her right side is going to start moving before long and she is going to walk; I can feel it! GO KATIE!!!!!!!!!! -Lynn Doll 3-25-10
April 1 2010 While in a local Doctors office waiting room I was again thinking about why all this had to happen to not just a child but the sweetest kindest one I ever knew. I looked up and had to photo this plaque hanging on the wall. I saw it at the exact moment I was thinking about Katie and wondering these thoughts again. It gave me chills. To the right is this plaque.
Tuesday I found Katie sunning on her front porch. She's still ready to smile and brighten your day even more.
Thank you Jennifer W of Florida for the information about M.A.P.S. as well as your positive experiences with your daughter and H.B.O.T.
April 8th
April 14 I was thinking about this site today and all the people who have visited here and supported Katie. To all of you I want to say Thankyou! Everything I've done here was to try to help Katie and I know we have had a lot of success because of you. Everything from awareness of possible therapies such as the RMNS and Dr Cooper which resulted from this website and the great turnouts of several fundraising events. Cash raised for the family and people who made improvements on the Doll home and devoted their time as well. Thousands of dollars came in to buy Katie equipment which is benefiting her every day.
Many thousands of prayers are still going up because people come here and read about Katie and her incredible fight. All of you need to know that if Katie could she would personally thank you herself with a huge smile on that beautiful face. I do know she would want someone to thank you until she can. Everything I put on this website I thought first if Katie would want that, and I know she would love her website.
Many of you gave everything you could to try to help Katie and some of you I will never know. Thank all of you so much! Some stumbled upon this site looking up The Katie Doll and found a real Katie Doll to love. Some were looking for boiled peanuts and found the link to this site I put up 2 years ago at boilednut.com and wound up spending a little more than they had planned on because Katie broke their heart. Thousands have come here from around the world and spent much time learning about this wonderful girl. Thank you all very very much.
I wish I had space to tell about so many special loving people who have visited here. Although he probably won't like it I want to mention Leighton Black of Mema's Attic for all he has done which is more than people know. He encouraged me at times when I was at the very bottom and distraught for many reasons. Leighton was like a brother because he loved Katie like I did and visited me several times just to cheer me up and keep me going.
The love from all the great people who visit here is absolutely astounding and has been wonderful to experience. I know Katie knows she's loved and I am so happy I am able to be a part of showing her how much. I need to be certain everyone knows how appreciated they are.
April 24 Lynn took this picture of Katie playing with her while doing her exercises. She's vocalizing more and more. She held her head up in the pool Thursday for 4 minutes straight 2 different times. Clearly she looks more and more vibrant and animated. Imagine the day soon when Ms. Katie speaks in that beautiful voice of hers. What a testimony to the power of love!
April 28 Katie having fun 'Scooter Boarding'
at The Care Center today.
May 7 Lynn said yesterday in the pool, Katie was suspended in the water and while being held was asked to take some steps. SHE DID IT! According to the staff at the Care Cntr.,
Katie walked the length of the pool a couple of times!
Happy Mothers Day Lynn. I hope to get this on video and post it here next week. This is big big news. Show em Katie, you alway could.
Katie has so much fun scooter boarding we are hoping to get the funds to get her a special made safety version of her own. Lynn said she smiles when they turn the corners.
May 13 Got to watch miracles in progress today at The Care Center. Lynn let me bring my camera to share some with you.
Today Katie was kind of tired due to the medications so we didn't get as many smiles, but even so she sure does put in the effort.
When I first saw Katie today she affectionately put her left hand on my face as I was saying how much I had been missing her. She does this to some and it speaks volumes. Katie is so full of love, and that won't be changing.
You can see in the video at times Katie actually helping to support herself even though only just over waist deep. It takes her some time but she takes the steps. This is all just so amazing to see. Whenever your feeling a little down, just come here and watch a video or two. Or maybe take a look at that beautiful smile. She wanted to be a teacher. I think she already is.
May 29 Hey Tom, Guess what Katie did today? You know her bracelets she holds onto all the time, right? Well, I've been taking them and laying them on her nose trying to get her to reach up there and get them. Today she finally did it! Three different times she reached up there and picked them up off of her face! That's big! Can't nobody say that's reflex! It's a slow process and I don't understand why it has to take so long but I know God has got her on the road to a complete recovery!
In the pool Thursday, K.P. wasn't there so Mr. Chris (another therapist) helped Melanie with Katie and Katie kept pushing his head under water, smiling the whole time. It was funny, she knew what she was doing! -Lynn
I am so impressed with the love and care Melanie and Kelly (K.P.) and others there show to Katie. It surely makes a difference as Katie fights so hard to get some function back. You can see even her right leg making steps in the water.
June 8 You can't have more fun than sitting on the back porch with Katie. Just try to read a book and off comes your hat then a hand explores your face and every so often your head gets pushed downward to see if you can read that way while a big smile is watching you. I can't explain it but it's been a while since I read with Katie and somehow she just seems more and more aware as well as playful. I believe the photo on left is Katie scratching an itch I have not seen that before. On right I pulled up my camera to catch that smile while she was playing with my hair. Sorry about the blur, it's not that easy to take a picture while your getting a new hairstyle. I got to chapter sixteen in a new book and it seemed to me Katie paid attention when it was interesting and started playing during the boring parts. Exactly what one would hope for from a really smart twelve year old. -Tom
June 25 Today I found Katie more interactive and playful and probably improved although I can't give specifics other than she has been able to hold her head up for longer periods even up to 20 minutes without help. Something we all never think about it is an ongoing battle for Katie just to keep your head from falling to one side,and the reason she wears that special made cap which is strapped to her chair. She was moving around more using her left arm to sort of push and adjust her upper body positions occasionally and she does turn her head inside that cap.
I was sitting next to her playing her little guitar when she put her hand on the strings a few times so I sort of assisted her hand to strum while I played the chords to 'Hang on Sloopy'. This of course got the smile going at least for a little while..
July 6 Lynn sent me this photo of Katie enjoying the fireworks on her back porch which made me think of the July 4th when she came running to get me so I could watch every last one go off. She would always look to see if I had seen the good ones. She was 10 then.
The good news is Katie is continuing to hold her head straight much better and for longer durations. Now often doesn't need that cap to help her and she will pull her head up more often when asked to.
Since Katie has things to smile about, we should all be really happy people pretty much all the time. -Tom
July 12 Thanks so much to Vivian and all the great kids at Tyger Baptist VBS who just made a gorgeous blanket and raised hundreds of dollars for Katie. It's been over two years since her accident but they still remember and pray for her. Thanks also to all those who keep up with Katie on this site each week. More photo's at the bottom of the page here.
VBS @ Tyger Baptist
Courtesy Vivian Lindsey
July 22 Got to talk to Katie today and Lynn sent me these pics of her while I was talking. I told her I was sorry I haven't been able to see her because I've been so sick and didn't want her to catch what I have.
Lynn said she she was paying close attention and smiled and you can see where she grabbed the phone with her left hand to help hold it.
I told her lots of people are checking on her on this website and I never knew anyone who had so many people who loved them as she does including all those folks at Tyger Baptist and around the world too.
Lynn said she is still doing new stuff like propping up her left leg on her own and even pulling up her right knee if you tickle her right foot.
She won't allow her head to droop very long before she pulls it straight, and she is turning her head left and right more and more to see things. They are changing over her seizure medicine in hopes the new one won't get her as sleepy as the old one did on occasion. Lynn hopes to start Dr Coopers RMNS again soon in the hopes to assist in bringing more activity to Katie's right side.
Aug 16 Coming up on 2 and a half years since Katie's accident and still every day and every night the fight to regain at least some of what was lost goes on. Katie or her mom aren't giving up. It's 24/7 at this house.
Because her right arm is so dormant some of the muscle is pulling away from the bone and they now tape her shoulder up to help this. The tape is removed every couple days which is extremely painful for Katie and heartwrenching to see.
She still shows small steps forward and does move a little more with her right side but progress is slow. Her left arm has come a long way and she expresses herself and grabs on to things with it. In the photo she holds on to her daddy and you can plainly see she is happy he is there with her.
Aug 20 Extremely important date for Katie Monday Aug 23 at 10 am with the doctors at Greenville Memorial Hospital they will be doing a Bronchoscopy as well as a Larangoscopy looking for nose and throat damage as well as to determine if it is time to remove Katie's Tracheostomy tube, a giant step in Katie's recovery process.
Please pray all will go well. Everyone is stressed a lot as for over two years suctioning her Trachea has been a constant 24/7 chore. Katie will start to gurgle or cough and suctioning would resolve this. Without access thru this tube it will be much more difficult if this problem persists. Of course the hope is that the Tube itself may be creating much of this problem and it would go away and Katie could manage the mucus and saliva with coughing it up and swallowing.
It is also very difficult to talk with this tube in place. May God bless Katie Doll.
Aug 23 Today the Doctor gave us some heartbreaking news that Katie may need her tracheotomy tube for the rest of her life. Due to neurological reasons, inflamation and scarring as well as possibly permanent bronchitis. Of course, no one expected her to come as far as she has and Katie may still overcome this as well, Her swallowing has clearly improved in the last months and she will of course be re-eveluated at some point. It is sad that her fight must be so hard and long. Please pray she will win out over this. I know she don't like it being there as she often pulls at it. Some day Katie will tell us all about it, but she still has more fighting to do for now.
Sep 24 Seeing Katie for the first time in weeks it was easy to notice much improvement. Her head will droop like before and sometimes she pulls it up on her own and several times she did it right when she was asked to. More eye and left leg movement too. Unfortunately the camera didn't catch the several laughs even out loud that she made while I was there. I tripped over a chair and I heard her laugh and a big smile. I asked her once if she was listening to me reading or the TV that was on in the background and another big smile gave that away. Lynn said another doctor is now saying they will try to reduce the width of her trachea tube to eventually get to where it can be removed completely at some future date. That is the best news. Also one of the new drugs that Jim Wiese suggested Amantadin seems to have positive effects on Katie's alertness. Thanks Jim.
