May 4th Katie's cold has improved somewhat and she is not coughing up as much as she has. Her mom is absolutely pushed to the wall with running the house, the other kids needs, and Katie's non stop requirements. You have to be there to appreciate it. Non stop 24/7. The phone rings,sorry can't get to it.
Katie cannot as yet control her bowel and bladder which means continuous diaper changes. She cannot be without visual contact at any time as she often lurches forward and is in danger of choking. Her Trachea is in constant need of suctioning, sometimes 10 or 20 times an hour. She needs continuous monitoring for her pulse and temperature and made the correct medicine dosages. The correct supplements to Katie's feeding tube and positional adjustments to prevent bed sores etc. are just part of a day at the Doll house.
I worry about her mom's health and the workload with it's stresses and what would Katie have if something happened to her loving mom. She is so devoted and refuses to allow Katie to want for anything. Although she does have some help from Louise and Annie, there's still 24 hours in a day and it is more than even Superwoman could possibly keep up indefinite without severe health risks.
One of the more difficult challenges is the extremely important physical therapy Katie needs every day. In many cases of TBI you see regression in the form of hands clenching and pulling up toward the chest and feet turning in and sometimes other sad results. Physical therapy could help prevent much of this and even bring dramatic improvement. Doing Katie's range of motion movements takes very much effort and is another time consuming daily (twice a day) scheduled event.
I found the QUADRICISER while searching for help for TBI on the web. This amazing machine could possibly help bring Katie back to us. It does the work of 4 therapists and simulates walking in a repetitive way that may help the brain in ways we don't even understand. The motorized movements it gently forces the patient to make would be impossible even if you had 4 people available which of course are not. It will definitely be a major improvement in Katie's therapy and help to alleviate her mom's workload. There are many who believe very strongly about this equipment. I believe it is an absolute must for our Katie.
You may wish to consider helping us put the funds together to buy this for Katie. We need your help. Funds from previous benefits are gone. Medicare does not cover the cost of this new equipment. Katie's insurance is nearly maxed out. I have posted a separate page to track the donations with a special thankyou page. I will also post any deposit amounts and totals directly from the Suntrust website here so we can all follow the progress toward this goal. Let's get started. Katie has been fighting so hard to show us tiny steps forward, perhaps soon we can see some giant leaps. This could be the push Katie has been needing. She certainly needs us now. One day soon she will thank you personally.
Please E-Mail me with any questions or concerns.
May 7th The doctors say Katie can come home. We are waiting for Katie's surgeon to see her since he is the most familiar with her. The Clonus may progress which is not good. Katie had some stroke activity after the accident and this may be related, no one knows for sure. Her heartrate is still elevated and she is experiencing discomfort which we pray will not go on much longer. I talked with doctors and nurses about the quadriciser and everyone thought it could only be good for Katie. There are videos about it here. I did post an older happier family portrait of Tony,Lynn,Lynzie,Katie and Brandon here. They make a beautiful family. Katie, as usual, just beaming.
May 8th Katie is home. Still some shaking with pulse around 100 -110. She has a lot of doctors appointments coming up in the next 2 weeks. The surgery of course put off a little longer. Hoping the infection with go away soon. Her eyes look a little better.
May 12th Katie was almost back to her old self, calmer and watching me as I read, her eyes almost as good as before her December surgery. She goes in for Botox injections for her urinary problems Monday. They will keep her overnite. We are praying this will solve the problem and prevent her having to use a catheter every day indefinitely, a major setback. Laying or sitting motionless for the majority of your day month after month can result in serious additional health concerns for anyone. So far Katie has been very fortunate. May this continue until she is back with us.
I watched a TV special last night 'Momentum in Science' which claimed new evidence is proving the most effective way to increase neuron activity in the brain even more than any drugs is EXERCISE. There is no way of knowing if the quadriciser will help her, but everything points to it. Katie has been trapped for over a year which is long enough for this fantastic human being. Please help us get her the equipment she needs. Please watch the videos of the TBI victims it has helped. If you have any reservations about this please feel free to call me at 906-6197. Thanks for considering helping and for keeping up with Katie. Also, if you are coming into the Doll's home please say hello to Katie, and remember she's probably listening. Katie's still in there, the kindest most loving kid I ever knew. -Tom
May 6th Katie was taken to Greenville Memorial Hospital because her heart rate had gone up considerably and her left arm began to shake. She is presently there being evaluated. In addition she has another urinary tract infection. She seems uncomfortable and becomes agitated easily. Her left arm and hand begin shaking when she is moved and continues a long time . Her BP was 130/90 at 5 pm and her pulse ranges from 100-150 (down from 180 last night). Oxygen hovers at 95 (up from 89 last night).
They believe the shaking is more like Clonus than seizures but they are still testing and trying drug adjustments. They performed an EEG and the results were disheartening. However Katie's surgeon was out of town and hopefully will see her tomorrow and we should know more soon. Today Katie's eyes seemed to mostly stare straight ahead. She would not look at me when I talked to her.
May 14th Posted new video of Katie being put in her wheelchair here. Finished 20.000 leagues under the sea and Katies eyes scanned the pictures whenever I held them up. Her left hand still shaking about the same so far.
May 19 Katie came home from the hospital at 2 pm today. They said they will not know if the procedure will have been successful for up to 3 weeks. If she starts urinating when she needs to, cathing will not be necessary, a serious setback potential.
The last 2 days Katie has needed much less suctioning (trachea) then the constant suctioning so far. Pray this continues. Lynn thinks it might be something in the medicine they gave her. No ones sure yet. The fluid build ups are so difficult for Katie and a non-stop workload for Lynn. Katie's eyes seemed to follow me somewhat up at the hospital. A little better then before, but still not as good as before December. Her little hand still trembling all the time.
May 28 Finally got to see Katie today and found her doing good. She looked at me when I said hello and seemed a little less uncomfortable then last time, not so much like something was bothering her as bad. Her left hand still trembling, maybe a little less. She has an occasional sort of whole body jerk a little more pronounced, like you were being shocked just for a second just once in a while. Lynn said her secretions are somewhat less with the new medicines except for last night and today. She still has the habit of lunging forward every half hour or so and you have to catch her and wait a minute or so until she relaxes back into her bed or chair.
Her left arm seemed slightly more active and once when she was being asked to turn her head to get the sheet under her, almost immediately she did a complete 180 degree left to right head turn very quickly. It was exciting to see. Lynn said she has done this before when she knew she needed to help. Katie seemed to be able to drift off to sleep very easily. I only made it to the 4th chapter of a new book and she was gone. She was intent for a while though. She slept so peacefully I think hearing a voice comforts her in sleep. I try to imagine what it must be like to not be able to move in your bed. Familiar voices are security.
She went to the eye doctor yesterday who said her right eye looks better and doesn't drain as badly. She is back on for the skull surgery soon and will also have the ear doctor test her eardrum / brainwave activity when she is put under just before this. It is so difficult to know how much she hears and understands. We still get eyeblinks sometimes when we ask things. I know I did when I asked her if she wanted to start another book. I can't tell you how great that is. I stopped once and asked if she wanted to keep going. Katie made me smile just like she used to all the time.
Suzanne helping Lynn with Katie's Stander, Katie gets an hour a day which will be increased. This puts weight on her feet.
June 3 Probably because of the new drugs to help minimize Katie's clonus and drugs for her urinary problems, for the last few days Katie has been extremely sleepy.
Falling asleep even in her Stander and seldom looking at you, just sort of staring drowsily. She is gaining a lot of weight in spite of cutting back her formula. No doubt due to changing to a totally inactive lifestyle.
Weight gain combined with inactivity can eventually result in life threatening illnesses we pray are not in Katie's future. She has been fighting so long and hard.
June 11 Katie is scheduled to have her surgery 1st thing Monday morning. The big day is finally here. Pray for success with no complications and a new series of forward steps in recovery.
Katie was tolerating her drugs much better today and stayed awake more than asleep as last I saw her. Her left arm tends to move and tremble somewhat while her right stays immobile. Her eyes still not following you as well as before her last surgery. Her cough is getting stronger and sometimes vocal.
Above photo of Katie outside with new puppies Courtesy of Carson
June 15 Katie came out of 4 1/2 hours of surgery today at about 1:30 PM with no presently known complications. When we went in her eyes were open and she was doing well with all her stats. BP around 107/71 heart rate around 75. 15 months since they sewed it into her abdomen, the final portion of her skull is back where it belongs. Praise be to God and thank everyone for the prayers.
Because Katie has grown so much it was necessary to reverse her skull portion and use mesh and skull paste to make it fit. No problem, she looks great. She will have a little irregularity but she's still beautiful. This is the first photo of Katie without a big dent up there. Dr. Troup is a great surgeon and thank you sir for putting our Katie back together so well. She will be giving you the hug of your life soon. She's ready to continue the fight. Katie should come home in the next couple of days.(also thanks Angela & Mindy & the whole GHS PICU team). -Tom
photo by Lynn Doll
photo by Lynn Doll
June 16 Last night got rough for Katie as her heartrate elevated probably due to pain as well as her breathing becoming erratic which continues as of 11 pm tonite. Her face and eye have swelled which was expected just like last Decembers surgery. They put her on 25% oxygen but her breathing seems to come only with difficulty like she has to force herself and not casual. This is a real concern and didn't happen before.
Today once she seemed like she was resting somewhat even with the erratic breathing when she opened her right eye really wide like she was in fear. Her mom had put a warm cloth over her left eye to try to help the swelling. When I removed the cloth her right eye seemed to relax and she calmed somewhat. My fear is that Katie didn't understand that her left eye was covered and seemed to panic. I pray I am wrong on this and this is not where she is mentally, and if it is, it's only temporary due to the surgery. It is so difficult to see what Katie has had to endure in the last 15 months. It's time for some good things to happen.
June 17 Katie fights back! Her breathing finally calmed a good deal today and almost back to normal. Her stats improved to pulse mid 90's oxygen low to mid 90''s BP good. They have taken her off all pain medicine as they seem to drop her oxygen level. Incredibly they do not think she is in great pain or her pulse would be higher. My thought was there must be excruciating pain but I am not a doctor. She does seem calm most of the time, far better than yesterday.
Also, I have not seen her left hand or arm tremble at all since the surgery. It never stopped before. Katie is not moving as much or lurching forward either. Her left leg and toes still move some but a little less. She does try to cough still. sometimes successful sometimes she needs suctioning. Sometimes you can hear her vocaliize the cough.
Amazingly, Katie was moving her right eye today. Perhaps partly because her left is still swollen shut, but the right eye has barely moved much at all since the December surgery. We didn't think she could see with it and it doesn't respond as well to light as her left, but today it was animated and I felt so strongly that she was using it to look at things. You could see slight adjustments as she watched you talking to her, and at times looked far left or right. This is new. We may already be seeing forward progress due to the surgery. I don't know but new eye movement must be good.
They moved Katie to the 6th floor as the PICU filled to capacity today. There is a view of the parking lot and I felt Katie was watching the cars below several times with that right eye. I expect her to be sent home soon. Perhaps we will soon see more right side arm and leg movement. The drugs for her prior urinary problems seems to be working and that is great news, so for now no catheter. For now no Clonus.
June 18 Katie came home today, her oxygen back up some but she developed a fever and her face is flushed with a temperature around 102. Lynn is watching her closely and if it stays up or goes higher she will go back to the hospital. The big fear is pneumonia and they are doing the chest thumping to keep the lungs clear. Her left eye has opened some and a little of the left hand trembling has returned but not as bad. The good news is it seems both eyes are more coordinated then they were the last six months.
Resting at home all put back together. Swelling still going down. This is the first time I have ever seen Katie sleep with her right eye completely closed. Also, both eyes work together much better. One giant step in the right direction! Katie's fever has come down also. Photo courtesy Lynn Doll.
June 25 The fever came down and the stats are back to near normal today. Although she is not tracking with her eyes very much,(probably too soon since surgery),something good to report is Katie's right pupil is responding to light. Not as well as her left, but I watched a light test and you could clearly see the pupil open and close. This is brand new and I hope one of many exciting post surgery steps forward.
The suctioning is relentless work for Lynn, 24/7 right now. Katie must be watched at all times as she still often lurches forward when she needs to cough, which is very often. She is still learning how to swallow and is successful 50% of the time. Her mouth is always full of saliva sometimes spilling out. I did not see much movement today other then the lurching. The trembling is all but gone too. Katie is getting heavier and growing too. It would be great if she got the equipment to keep her body moving and ward off more weight gain before it comes along with more potential health problems Katie doesn't deserve.
Her eyes are not moving that well but do move pretty much in sync, although still a little cross as you can see in photo. She mostly stares up at the ceiling but it's only been a week she's been home. She does not watch me when I'm reading yet but occasionally she will land her eyes right on you just briefly.
We took a trip to the BR high school photo's here and Katie just stared straight ahead and up. She has been back to coughing and more secretions the last few days but may be due to being outside more (on her porch) or effects of anesthesia wearing
July 1 I think there is very slight improvement in Katies eyes though still not tracking but looking around a little more today. Her breathing seemed easier also. I saw both her eyes were slightly open when she slept, which she can do quickly and soundly. She will on occasion look you directly in your eyes but not when you expect her to. Katie didn't seem agitated or uncomfortable today..
Nov 6 Lynn & the kids were doing the Santa Rap when Katie broke out her latest smile here.
July 3 Katie got her much needed and much better new boots and hand sprints today from Orthopist Bill Cooley of Sprinkle Prosthetics. Not only better but Katie's favorite colors too.
Tomorrow Katie will take a trip to see her much loved uncle Doug. (Photo on Katie Art page). They have not seen each other since before the accident so it will be great for Katie who used to visit him all the time.
July 4th will be 2 years since Katie and I had so much fun and her insisting that I stay for all the fireworks. I still remember her looking to be sure I was enjoying them as much as she was. It was always important to her that everyone else was enjoying themselves.
Sometimes Katie still clenches up with her hands and stiffens her arm. I did notice for the first time for me, she relaxed her clenched fist when she was asked to by Suzanne. I hope this was more than coincidence. . -Tom
July 8 I am happy to report that when reading to Katie today I felt her more alert and responsive then anytime back to before her December surgery. Since it's only been a month since this last surgery I feel she has made progress in this regard. To have Katie study your face and scan the pictures when your reading like she did before is very exciting and promising. I can only report what I see and feel as a layman.
She is still gaining weight and her body does not look well after so much inactivity. Her eyes are working better and better but still not tracking that well. But I think some improvement there too. She seems to be swallowing better, but still not moving her limbs other than her left arm slightly trembling and an occasional stretch mostly from her left arm and leg. Her right arm and leg seldom move at all.
I would like to say a special thanks to all those great kids and parents of the vacation bible school of Tyger Baptist Church who gave all they could to help one they love and pray for. They gave toward both the therapy equipment and to help Katie at her home. Katie will thank them all soon and be praying with them to help others as well. Katie's kind of people. -Tom
July 14 Six days since I saw Katie was too long, but it was great to be with her. Finished another book (video here) you can see her look at pictures and watch certain things with both her eyes moving together as I read. She stretches sometimes making a yawning sound, or like when being moved in the video you can hear her voice.
Katie will go in for a CT scan in a couple weeks to check the shunt which contols fluid around the brain. You can see how much weight she has gained even in her face. They have cut back the carbs coming through her feeding tube in an effort to slow the weight gain which once it's there, will be nearly impossible to gid rid of. If somehow we could get her the therapy equipment this could be very important. It's hard to give money right now but when you think of what a bad day you have, please consider Katie's day. It's not how she deserves to spend a summer. You can see her struggle with sort of choking and re-learning how to swallow. Often she seems uncomfortable and agitated, but helpless to change it.
Katie's fight is tougher than any heavyweight bout or cage fighting match that has ever been. It's all day everyday and she isn't giving up anymore than her mom is. This is a child suffering in Taylors South Carolina right before our eyes. She was always there for everyone when she was able. It would be great to see more people there for her now after all this time. She is my all time greatest hero and I know anyone who knew her before her accident and now would feel the same. Many have shown love in the past for Katie, and as the time goes by us, we must not abandon this wonderful child in her daily struggle.
News story in Greater Greer News section of Greenville News July 14 here.
SEP 6 The hectic pace around the Doll house has picked up even more with school starting back and the needs again outweigh the resources. Another RN has been assigned to help and is starting all over which creates more adjustments. Katie has picked up a cough/cold and needs to be watched more closely than usual if that's possible here.
GREAT NEWS !!
Katie has been observed picking her left arm up from dangling beside her wheelchair to a resting position on the arm rest! This was seen several times lately. THIS IS A DELIBERATE ACTION FROM HER BRAIN TO A LIMB ! I don't see how this could only be a reflex. To me it's a breakthrough. Also, Lynn said Katie has when not too tired, more than once squeezed her hand on command and followed a lit red ball with her eyes although not always looking directly at it. This is celebration time, My neighbors must wonder why the big yell.
On September 23rd her neurologist Dr Honeycutt will be re-evaluating Katie for possible rehab therapy, something we have been praying will happen. Katie must perform enough to show she understands and can respond in some form. Something like what Lynn has seen happen but in front of the doctor. She was given a swallow test which did not go as good as was hoped. This test will be given again soon. Katie keeps fighting !
SEP 17 Lynn told me today that Katie has been responding to some commands! Although she takes a few seconds if you give her time, she will look to the left or right and up or down when you ask her to. She will also open her eyes real wide when you ask her to do that. When asked to squeeze her left hand, sometimes you can see her chest move as if she is trying to and sometimes you can feel slight pressure.
Katie will be seeing her surgeon Dr Troup Wednesday and hopefully he will confirm this. I mistakenly said she goes for evaluation on Sep 23 when it is actually Dec 17 at Roger C Peace. Pray that Katie will have a lot to show them then. Katie's cold is almost gone. She still has some of the coughing. I hope to see her myself soon, I have a backseat full of new books.
When movie starts..right click then click zoom...full screen
Sep 22 Seeing Katie today was so great. I believe she is improving and can sometimes when not too tired hold her head up, blink her eyes when asked and look to the left to a certain degree. She just takes time to do it. If you wait about 4 or 5 seconds she often responds. Watching her only reinforces my strong feelings about getting her the quadriciser asap. Seeing these advances in Katie means she CAN improve, we just need to make it happen faster.
When she first went on her stander (see video) she didn't even understand what was happening. Since then I believe the physical movement and energy expended by repeating the stander on a daily basis has brought her way past where she was. Katie's body and mind are learning. It seems she has made almost as much progress in the last month or so then the entire year prior. Please read this letter from Katie's Therapist.
Oct 8 Could this photo be the first long awaited smile from Katie ? I'm not going to say but it sure looks like a smile to me. Lynn told me tonite that she snapped this photo while Katie's brother Brandon was playing music very loud (music Katie was familiar with) while acting out a dance in front of her. Her left hand and foot were also moving more than usual.
Wouldn't it be so like Katie that some of her first movements would have to include the one thing we most remember her for ?
Lynn also put the phone to Katie's ear so I could tell her some stuff and when I would be coming to see her. I heard her ask Katie if I was still talking. She told me that Katie immediately started blinking her eyes. Also, while I was talking Katie was looking around the room as if you or I would if we were intent on what someone was saying on the other end.
Oct 13 MORE IMPROVEMENTS Today was great to see Katie taking a couple more steps forward. Although slight they were very noticable in that she held her head up longer than ever while in her stander. Instead of her head falling forward as much,you can see her push it backwards enough where she doesn't have to hold it up but sort of rests her head on the stander itself. A deliberate act.
Several times I did witness Katie pick her arm up and put it on the armrest without any help. Often she is moving her left hand and if it wanders far enough it will latch onto something like her pants or your shirt or your arm. More often than not today, Katie was able to resolve her secretion issue through a cough and swallow that was successful without having her Trachea suctioned. It would take her a while but she
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was accomplishing this task. She will get better at it. She is such a fighter. Thanks Lynn for allowing me to continue to be a part of Katie's life. I want to be there for her anyway I can. Reading with her is the best almost like a sacred time we have. Katie is listening and becomes so relaxed and comfortable. We both get a lot from it.
Driving home after seeing advances like today makes you feel as if your a part of something much bigger then you can
imagine. I know why Katie was put into my life 3 years ago and it gives me chills now. MATTHEW 6:10 I saw a CD of Katie at a dance recital put on by Louise and will try to get it up on this website soon. Katie wasn't bothered at all by being in front of this huge audience. We all watched it together with Katie in her stander. She stood out from everyone. I told Katie the truth,she was a star. Taylors would be on the map if American Idol had been lucky enough to get her. Katie's newest smile here.
OCT 14 See Katie's best
smile. Click on Newest photo
at bottom of this page.
Oct 20 Lately Katie has been back to where she used to have excessive secretions and lots of coughing. About half the time she is able to resolve this on her own and the other half needs more suctioning. Could be the weather or she may have caught something.
Katie's left arm is more active than ever and grabs onto anything she finds. The hairbrush was laying on her bed and she found it. She stayed focused on me and the story I was reading the whole time. Lynn says her dad can make her smile at times when he visits.
She continues to amaze me. I challenge anyone to spend a minute looking at this photo and not be moved. I cannot imagine being where Katie has been and is now and still come up with any kind of smile. Yet there it is, her incredible spirit shining through. The Katie I knew is still there. My all time greatest hero.
I wish to thank those great folks here for helping us move towards the Quadriciser goal. I promise a video or two with Katie working out on it.
Oct 23 Every time I go to Tigerville I see improvements. Katie's secretions are better and it's almost like any day now Katie will say something. She vocalizes more with her yawns and coughs and always a little more animated than the last time. All the love and dedication to her from so many is having a definite impact. It is a long hard road ahead and behind but this loving child isn't quitting so how can any of us. I tried to get Katie to smile but couldn't do it like her dad did. She had such a close bond and love for her father Tony Doll that no one will ever be able to get Katie to respond as well as he. In all the pre-accident
photo's of Katie with her dad she was just beaming with joy. Katie truly loves her parents beyond anything in this world.
As Katie has passed away there is no longer a need for any type of financial help. Thanks for your interest in this wonderful little girl who is now in a better place.
