I read to Katie 3 hours and seemed as if I kept her attention or I would have quit.
One book had lots of photos and when I would turn the book towards her and explain the photos her eyes went to the book, then when I started reading again back to me. I don't know if it was just the movement as she was sort of turned toward me and I sat in her field of vision so to speak.
For just a few moments her eyes did something I had never seen. They sort of made quicker short jerky movements while still looking sort of straight ahead. I tried to get the camera out but was to late to catch it. Lynn said this also happened yesterday and just for a minute or so.
It was almost sureal as something new was definitely going on there. This was just after finishing 3 hours @ 10 milliamps with the EMPI stimulator on her wrist in her wheelchair, and Lynn had laid her in her bed, calling me to quick come see. I saw about 5 seconds and ran to get the camera, ...too late.
I tried 4 times to get Katie to blink but absolute zero this time. Pam said that Katie was sleepy most of the day until I came over and started reading. Her eyes seemed to open wider and more alert. I started reading to her about an hour into the stim. I sent a video (see below) to Dr Cooper and he believes Katie has shown signs of improvement since the video I sent him on the 9th.
Katie has an appointment to see her brain surgeon Dr Troop next Wednesday. They are still working on her new room,slow but sure. Labor shortage problems.
Katie is still unable to communicate. Please keep praying !
The first week after Katies surgeries I was there when the doctor said..."The biggest danger to Katie now is infection" It is hard to watch as visitors enter her room and touch little Katie without washing or sanitizing. They are so happy to see her they completely forget of the danger. Guests are all welcome but please do not touch Katies face and please use the sanitizer as soon as you enter her house. Katie has open head wounds, a stomach tube and a tracheotomy. She is EXTREMELY vulnerable right now. Do not cough over Katie and if you are sick please do not visit until you are well. Please understand and if you see someone unintentionally endangering this precious human being, remind them of this danger. It is very real. Thankyou very much and God bless you. Katie has been fighting a hard long battle, please don't be a reason she could lose. -Tom Lowe (peanutguy)
Spent time at Katies house which included more reading. At one point she was facing straight ahead and her head turned toward me with no help. Then her eyes ever so slowly turned to the right to look directly at me. The cuff for the stimulator was put on the right wrist by her mom with the direction of Dr Cooper over the phone. She was moving somewhat but nothing dramatic except for one time when she raised her knees, head and shoulders higher than I had seen before. This was for maybe 15 seconds. Lynn gave me some earlier Katie pictures which I posted in the gallery
Today it seemed as if Katies right eye, unlike her left, rarely blinked. As I said goodbye, Katie had been turned on her side towards the door and I watched as her eyes distinctly followed me walking across and out of the room as if anyones eyes would do.
I didn't notice much change in Katiie today. She is put in a wheelchair about 5 or 6 hours a day and connected to the EMPI stimulator for 4 hours. The settings are to cut off and on about every half minute. Today, I saw that almost every time the stimulator cut on, Katie slowly moved her arms (especially the left) in a sort of storming type of posturing. Also, yesterday and today Katie has been making constant fluid buildup in her mouth and lungs. She needed to be suctioned almost every 3 or 4 minutes while she was in her chair.
Also, once again right after she was disconnected and put to bed (the same time as before) her eyes began with those jerky strange movements and like before just for a minute or so. Like she was more alert and both eyes were somehow more lifelike or less sad. It's hard to explain. Then right back to the way they usually are. Lynn said this happened yesterday as well.
Katie goes to see her brain surgeon Wednesday. This will be the first time he has seen her since Katie was at the hospital.
Katie was taken to see her pediatric neurosurgeon Dr. Chris Troup today. Dr Troup told us that Katie is no longer in a coma but may be on her way to a state known as 'Locked in'. This would not be good. He said that since the experimental median nerve stimulation will not harm Katie it is worth a try. The main thing I came away with was the concern over possible infection from what commonly presents at first as bed sores. Katie needs to be inspected constantly for any beginning of this potentially life threatening and difficult condition. The doctor was hopeful that Katie will continue to show any signs of improvement but it is all speculation at this time.
He is hoping to re-attach Katies skull partitions (which are in being kept alive in her abdomen) within a month or so. He OK'd taking Katie outside in her wheelchair for brief periods which is good news. Katie won the Kids Wish Hero's award and was presented with her medal and gifts in Dr Troups office.
No changes. Read to Katie and she seemed distant only sometimes interested. I probably picked the wrong book 'Alice in Wonderland' I made it through but it even confused me. Sorry Katie. New gallery started with only most recent photos.
I am not a doctor but to me it seems you can see just a brief moment of improved eye movement here which was seen recently a few times before, even though just for a few moments. I filmed this July 24 at 5:30 pm. Start movie then immediately click pause (which is the same start button) then right click and click on zoom...full screen then start movie again. It is very short.
Katie sitting outside for the first time in 4 months.
Notice her left arm which seems to stay stiff more than before.
July 28 It's not just Katie who's improving, so are my reading skills. We went cover to cover on another book today and Katie watched me the whole time. About 5 hours and she did not tire. When I got to 'the end' she started to close her eyes. I spent a little time explaining slowly how nice it would be if she could practice blinking to yes/no questions. With her mom watching, Katie blinked twice very slowly on two requests to do so. These weren't regular blinks but had to be deliberate eyelid closing and openings or it was a one in a million coincidence. Chills went through me the way she did it.
Sometimes Katie will sort of lurch forward and we have to sort of catch her and hold her head until she relaxes and you can put her head back on her pillow. Today once she sort of came towards me while it seemed she was trying to talk. I held her head and rested it back down and then saw tears coming from her left eye. I had not seen this before. I don't know what this means or whether it is emotions or not. I do know I cannot imagine how difficult this may be for anyone let alone an active fun loving child who had just turned 10 years old.
July 30 Today I was sitting just to the right and out of view from Katie who was in her wheelchair facing towards the TV. She wasn't watching. I was watching her closely and I knew she knew I was there. Then her head moved almost imperceptibly a quarter inch to the right towards me. Not enough to look at me. I kept watching, hoping, then in about 2 minutes it moved the same way again. I waited and 2 minutes later, again. It took maybe 20 minutes but after maybe 7 or 8 moves her head had turned far enough where her eyes could slowly turn and look directly at me, and when they did, more chills.and a rush of pure Joy. Then one of her aunts came in and straightened her head back straight forward. So I moved myself into her view again.
Aug 6 I proudly took my post as Katies official reader again today. Although Katie seemed tired when I got there, she seemed to wake up somewhat and paid attention for about 4 hours. I just can't leave when she watches me and seems interested and looks at any pictures I hold up. My gut feeling is that this may be helping her as being interested in anything must be healthy for anyone in Katies situation. I have to get in close within a couple feet of her face and read with intent on the story. If I back away too far I sort of lose her.
Lynn told me that yesterday when Katie woke up, her eyes were more open and active then she had ever seen and she snapped this photo at left. Katie stayed this way for a long time, most of the morning. She also cleared her throat several times completely on her own. When I was there today, Katie needed less suctioning then usual too. I didn't see much movement but Katie had a big day and was tired. Later tonite, I did see the biggest yawn I have ever seen.
Aug 11 No noticeable change. I read to Katie and couldn't tell any remarkable difference in her manner. I wish there was more to report. Thank you for coming here to check on her and thanks for your prayers.
Aug 13 Katie has again raised her head up somewhat on her own as she had once before. If you hold it to keep it from rolling to one side, she keeps it there for a while. Not much else to report. The RMNS has been raised to 10 milliamps.
Aug 18 I got to Katies house at 4 pm today and found her sitting in her wheelchair facing the TV which was on, but Katie had her head turned away towards the wall. Her eyes were open and seemed extremely unresponsive and sad. I began talking to her up close and after about a minute or so she seemed to sort of come alive and her eyes got wider seeming to gain interest. At one point she leaned towards me looking in my eyes and it was as if she was trying to talk to me, moving her mouth but all that came out was an ever so slight little gasp. About 1/2 second long. I tried hard to elicit some eye blinks even using cue cards (in case she could read) but to no avail. At one point though, when asking her to blink twice and holding the words 'blink twice' in front of her, she started blinking rapidly maybe 10 times. I wish I knew how to proceed trying to communicate, I often feel Katie is trying but she still has no control. Her fists were clenched hard and she seemed tired most of the afternoon. I didn't feel our reading session went as well as usual.
Aug 22 Today Katie looked good and seemed more alert. She watched me intently as I read to her and her mom showed me a picture of her taken this morning that was amazing. Mornings are the best for Katie. I will post this photo soon. Katie was taken off the RMNS temporarily.
Aug 25 A downward turn when I greeted Katie today it was the first time that she did not even react to me. Normally she seems to become more alert and interested. This was a bit un-nerving and sad. I read only about an hour as she seemed very tired and distracted. Katie goes to have her Trachea and stomach tube routinely checked tomorrow and a cat scan Wednesday.. Will report here on any doctors comments. Please pray some dramatic improvements soon. The 27th is the 5 month mark from her accident.
Aug 27 The scan showed not much change except Katies ventricles have enlarged somewhat and when they replace her skull flaps there will be some empty space inside little Katies head. This will not fill in,however,the function of the dead tissue and the part of the brain that was removed may make similar connections in what brain tissue is alive and take over some lost abilities. There is no way for the doctors to determine if this will eventually happen or how long before it might.
I snapped this 8-27-08 photo where you see Katie very tired after a big day going for her scan etc. She often sleeps with her eyes slightly open.They will again start the RMNS tomorrow at 10 am. The hope is for this to help those connections grow. I read briefly to Katie around 6 pm but she soon lost interest,although not so distant as on the 25th. I had been mailed an interesting article about a Dr Donald G Stein about using Progesterone for TBI and Dr Troop is looking into this for Katie. Dr Stein had won 2008 breakthrough award for his studies on this. We are trying to look at every possible hope as today is the five month mark since the accident and Katie is still unable to communicate or make any meaningful movements with her body. Also,Katie had her stomach tube replaced with some difficulty. They lost the end into her stomach and left it hoping she will eliminate it through her stool. Lynn said it was painful and Katie did cry during the procedure.
Lynn has some new photos I will be posting in the next few days. Please contact us if you know of anything that may benefit this wonderful child of God in any way at all. Thankyou for your interest in her.
Aug 29 Turns out that Katie may not have been moving her head towards me on purpose but that she ONLY turns her head to the right. By coincidence this was always where I would normally sit when I read to her. Both when in her wheelchair or her bed. Today I saw that she will do this without my being there. She cannot turn her head back straight or to the left on her own. Several times a low whine like sound has come from her throat which is fairly new.
Hopefully Katie will get her left skull flap attached within a week or two. The risks are infection and that part of her scalp has attached to her brain. Also, it may no longer fit properly which would mean having a synthetic one designed.
I cannot go more than a day and I feel this powerful draw to make the trip to try to distract little Katie from what has got to be a personal situation beyond anyone's grasp. To watch her laying in bed her eyes scanning across the ceiling or wherever someone has pointed her head is almost unbearable.
Please pray for some dramatic improvement soon.
Sep 1 Katie showed some interest in the reading time today. I asked her if she wanted me to continue after about 2 hours and immediately got about 5 quick blinks. I have no idea if that was a yes, but I doubt it could have been a no, so I read on until Pam said it was time to wash Katie's hair and put her in back in the bed. Tomorrow Katie goes back to the doctors for a checkup of her Trachea etc. I cannot report any observable change from my viewpoint. I'm hoping the doctor will give us an OK on trying Abien and at what dosage after the special about some good results for TBI on TV last night. Katie is doing 2 hours of the RMNS twice a day @ 7 milliamps. I noticed as before, an increase in her saliva and congestion. Carson's mom (Carson was in the go-cart with Katie but is ok) sent me an interesting article about implanted electrical stimulation. Sep 3 Lynn took this photo at left early one morning last week. Katie is always more bright-eyed and alert early. She tires after her morning range of motion movements and the RMNS. By about 1 pm she sort of comes and goes. Had an interesting chat with kind Amelia Cronic about an organization that has helped her child Noah. I am very impressed with the number of people with caring hearts who want to help.
Looking into this face of a child with her eyes watching you and yet no comunnication, no ability to move in any meaningful way. No way of knowing what she may or may not understand. Perhaps no knowledge of who she even is. No way of knowing or anyone who can tell you. Only speculation and hope for the best.Someone you once knew as a fun loving and happy constantly smiling child who only brought you enthusiastic cheer and love. Only God understands.
Sep 16 As its been over a week since I've seen Katie it was wonderful to visit her tonite. I missed her so much. I wish everyone could have known her. I feel it so important to talk and read to her as I believe it is helping her somehow. I encourage everyone who knows her please call ahead,visit and tell her the latest news or whatever may distract her from her terrible situation. Remember Katie is still there, she hasn't become a 3 year old. Also please don't ask open ended questions and wait for a response which I still see people unintentionally doing. Just be like your with an extremely intelligent young lady. I myself am honored to know her and so proud to have been her official reader. Of course, you can bring a book too.
I found a great Kid's book, The Tale of Despereaux, and I feel very strongly that Katie was very much into it. Her eyes were anticipating like I haven't seen before. If it was because it was a good story this is fabulous news. Katie has also been started on low dose Ambien which has demonstrated benefits in some TBI cases. They are also still doing RMNS 2 hours twice a day.
As of now, the plan is to re-attach portions of Katies skull around the 30th of this month.
My prayer on the way up to Tigerville was that I would see any small forward step and not because I was asking, as I am not doing what God asks of me, but because Katie was doing what God asked in loving others even Gods creatures. On the way home I made certain to thank God for what I had seen tonite.
John 15:12 This is my commandment, That ye love one another, as I have loved you.
Sep 26 - Katie took her first ride in her new van along with all her family. It was awesome! Katie seemed excited and wide eyed the whole time. They visited Tooter Town to see some of her friends and her favorite animals. When Katie was asked if she wanted to get out to see mater (a pet cow) she sat forward and lifted her legs as if trying to get out of her wheelchair. It was and exciting evening for everyone. Especially for Katie.
Sep 29 – Katie went for her pre-op visit today and to see her neuro surgeon (Dr. Troup). The original plan was to reattach the left bone flap in Katie’ skull that is still be kept alive in her abdomen. After visiting the doctor, he decided that the shunt that has been draining and keeping the fluid from building up too much on her brain needed to be replaced with one that he could adjust. He said he would like for the fluid to build up a little more to fill in the space created from her initial surgeries before he replaced the bone flap. He said that this would be less stressful and better for Katie. So her surgery is scheduled for the tomorrow September 30th. Please pray for Katie and for the doctors and all who will be caring for Katie while at the hospital.
Sep 30 - Katie underwent her surgery today to replace the shunt. Everything went great! Katie was wide awake shortly after getting back to her room from surgery. Hopefully Katie will be able to return home as early as tomorrow! Another sign that God still has his hand on Katie..
Oct 1 – Katie is doing great. She has slept and seemed a little more tired than usual because of the anesthesia. But she is doing very well. The new shunt is working well. The spaces on each side of Katie’s head have filled in nicely. Her head now looks normal. All her vital signs have been good the whole time. Thank you Jesus! Dr Troup came by late this evening. He made a small adjustment to the shunt and said that Katie was doing so well that he discharged Katie to go home.
Oct 2 – Katie still seems a little tired because of receiving anesthesia, but otherwise she is doing well. She has been awake a good bit today. She is answering yes or no questions with eye blinks! And continuing to show small signs of improvements each day. Please continue to pray, believing in faith that God, through the blood and sacrifice of our Lord and Savior Jesus Christ, that Katie will be healed completely.
Tom, here are several days of updates to add to Katie’s website. Thank you for taking the time to post them. ---Lynn, Louise & Pam (the three musketeers). . .
Oct 2 Bryan has told me that Katies eyes are somewhat more co-ordinated in following objects and people in the room. This is great news. Small steps forward. Lynn has said she will get me a release on the photo thing so the whole website can get back up. I asked her to tell Katie I loved her and she said to tell her myself and held the phone to her ear. I told her I loved and missed her and hoped to read to her again soon. Lynn got back on and said Katie was doing lots of eyeblinks when I was talking to her.
I never would have guessed that late in my life simple eyeblinks could mean so much to me. I thank everyone who has emailed me to keep this site going. Thankyou for caring and your prayers for this wonderful child. I was also emailed the below important condition updates Sep 25 - Oct2 which are very encouraging!
Oct 5- Katie and her family went to church today for the first time since her accident. Katie appeared tired before the service began, but as soon as the music and singing started she opened her eyes wide and stayed awake during the entire service! She seemed to really pay attention and enjoy the service. It was a great day for Katie as well as her family.
Oct 6 - Katie was started back on the EMPI Stimulator today after being off of it for a week due to her recent surgery. She wears it for 3 hours per day at 7 milliamps. Katie is still only able to communicate through eye blinks to yes or no questions. Only now, instead of a 20 second plus delay for her to answer, she blinks almost immediately and the blinks seem to be more deliberate. Katie is also moving her eyes more. At times she can follow slow movements in certain directions. Her eyes are more coordinated and are moving together. It is obvious that God has Katie in His hands and is using her to touch so many peoples lives in so many ways. Thank you Jesus!
Oct 8 - Katie went back to see Dr. Troup today for her post op visit. It went well and he was pleased with her progress. Her incision is healing nicely. Dr. Troup made an adjustment to the new shunt to turn it up slightly to allow a little more fluid to build up in her brain to fill in the space. She is scheduled to see the doctor again next week to check the progress of the shunt. Dr. Troup said that if all goes as planned after he sees Katie next week that he will schedule her for another CAT Scan in a couple weeks to look and see if the spaces are filled in the way he wants. If so, he hopes to replace her left bone flap around the first week of November. Please continue to pray daily for Katie's continued healing and recovery. And remember to thank God for what He has already done and for what He will continue doing for Katie and her family.
Oct 11 - Katie had an exciting day today. She was dressed up in a pumpkin costume and taken to the Fall Festival at her school (Tigerville Elementary). Katie was wide awake and seemed to be taking everything in. Including getting to see a lot of her friends. Her Aunt Pam pushed Katie in her chair for the cake walk, which has always been Katie's favorite part of the festival. As luck would have it, Katie won a pound cake. She also go to play a couple games of Bingo. She seemed to have a fun afternoon.
Oct 12 - Katie and her family got up and went to church this morning. After church, they went by the barn at Tooter Town to see the animals she loves as well as some of her friends. Then it was off to El Rancho Grande for lunch. After that they stopped by Ingles for a few groceries and then home. It was a full day and Katie was tired when they got home late that afternoon. Katie appears to really like finally being able to get out of the house and go places with her family.
Oct 14 - Katies's new room is in the final stages of being finished due to so many, many people volunteering countless hours and time to help. Hopefully if everything passes inspection, she wil be able to "move in" next week. There are still several things that need to be completed outside, but the inside is pretty much finished. Today while Katie was being read to she seemed more tuned in. Her eyes were really looking at the reader. When the book was turned around for her to see the pictures, her eyes would slowly look toward the book. As different things were pointed out to her, her eyes were moving and looking intently, really seeming to study the pictures. This is something that has been observed before, but now it is more consistant. Katie is swallowing well all the time. She has started to move her mouth a little differently at times when she is spoken to or asked a question. We believe this is the beginning of her actually trying to form words to talk and communicate. Please pray and thank our Lord for what he has done and is continuing to do for Katie, and that we will continue to see the manifestiations of what we are all praying and believing in faith!
Oct 15 - Katie went to see her brain surgeon, Dr. Troup today to check the status of her new shunt. the doctor said the spaces in her brain needed to fill in a little more before he replaces one of the bone flaps. So he made another adjustment to the shunt. At times it seems like she has to take a step back in order to move forward. Because every time an adjustment is made to the shunt, she seems more distant and less focused for several days. The doctor said that this is to be expected due to the changes in fluid level and pressure in her brain. With that said, Katie is going great! She is growing like a weed. Please continue to pray daily and thank God for the work He is doing in Katie.
Oct 22 - Katie went to see Dr. Troup again today for another shunt sdjustment. They are going to schedule her for another CAT Scan in a couple weeks. This is to make sure the shunt is doing what the doctor wants. If so, then he will schedule Katie for surgery to re-implant the left bone flap. Another step forward! Praise the Lord! This afternoon Katie is tired after a long day getting ready and traveling to see the doctor. Katie has occasionally been making some sounds. Sometimes she sighs with the sound of her voice. She has even coughed a few times with sound. This is definitely something new for her. Another small improvement! Pray that this continues with more consistantcy.
Oct 24 - Kate was evaluated today by a newly formed "Brain Injury Team" for the Greenville County School District. They (the team) provide intensive occupational, speech, and rehabilitative physical therapy specifically designed for patients with brain injuries. After an extensive evaluation of Katie, they are reviewing her case with their board and will be letting us know by Thanksgiving if Katie will be accepted as their first patient. Please pray that Katie qualifies for the treatment. We believe she will. This program would provide intensive therapy for 5 to 6 hours per day by highly trained therapists. This can only help her! Katie's family and care givers work with her daily, but still feel that at times they fall short of all that could be done due to the lack of training and knowledge. Katie is very slowly showing signs of progress. She is a real trooper. Keep believing in faith for Katie's continued healing.
Oct 27 - This evening Katie and her family went to watch Lynzie (Katie's big sister) clog with her clogging class. Katie was very alert and watching for a long time. she even moved her feet several times. For those of you who don't already know, Katie is also a clogger. She appeared to enjoy the outing. Although by the end of the class Katie seemed tired. But it is great for Katie to be able to go places and do things as usual with her family. The stimulation of different environments can only be good for her.
October 28 - Katie's physical therapist came out to see her today. He comes out once a week to do range of motion and tries different things to help to stimulate Katie. Today, as usual, we sat her up into a full sitting position on the side of the bed with her legs over the edge resting on a foot stool on the floor. We put her hands down onto the bed on each side of her so that she can try to support herself. It also allows her to bear weight on her arms and feet which is important to help keep her bones strong. Today we did something new. We actually stood Katie up into a full standing position for the first time. Surprisingly, Katie actually straightened and stiffened her legs to support herself. We held her up for 2-3 minutes. She seemed to tolerate it very well and her vital signs told us it was not stressful for her. An excellent sign of encouragement. As you would expect, after putting Katie back to bed, she was tired and napped for a while. Then it was up into her wheel chair for the afternoon. It was a great day.
October 31 - Katie was taken to Foothills Baptist Church this evening for their Fall Festival. They had live music and Katie really appeared to enjoy it. Because of the cold, Katie wasn't able to stay out very long. But she still managed to end up with several new stuffed animals and a fun evening.
November 1 - Today Katie went to Pleasant Grove Church for another Fall Festival. It was warm and was a perfect afternoon to be outside with Katie. She watched as the other kids jumped on the inflatable's. She was pushed in her wheel chair for the cake walk. Katie won twice! Instead of cake, they gave her a stuffed animal and a t-shirt. She also collected 2 treat bags and met several new friends. Katie appeared to enjoy herself.
November 2 - Katie and her family went to church again today. Everyone was glad to see them. Katie seems to pay attention to what is going on around her. Especially when she is in a new environment. She is continuing to make occasional sounds when she sighs and coughs. It is wonderful to hear the actual sound of her voice. She is doing this with more frequency. We still believe it is the beginning of her being able to talk again. Please keep praying for this manifestation.
November 5 - Katie went for another CAT scan today and from there to see her neuro surgeon. The doctor said the shunt is doing what he wanted, so he is going to schedule Katie for surgery to replace the right bone flap. The right one is the smaller of the 2 that were removed when Katie first had surgery after her accident. Dr. Troup said he wanted to do the smaller side first to see how Katie would tolerate it and adjust to it being replaced. We are currently waiting for the doctors office to get the surgery scheduled, and to call and let us know the date and time. After leaving Dr. Troup's office, they went to see Dr. Abrams for him to check her trach. The appointment went well. Both doctors said Katie was doing good. She still hasn't gotten to move into her new room yet due to a couple small delays. Hopefully, these will be resolved by next week.
November 13 - Katie has had a sleepy day today. Maybe because it has been cloudy and raining all day. A good day to sleep. Otherwise, she is doing great! There is definitely something different about Katie over the last week or so. She appears more focused.....better in a way that is hard to explain....something in her face....maybe her expression? It's almost as though she is on the edge of something. Some kind of change for the better that we have all been praying and believing in faith for. We know for sure that God has Katie in His hands! There is no doubt about that! KEEP PRAYING! She is still on daily Ambien therapy, as well as wearing the EMPI stimulator. She is now up to 4 1/2 hours per day on the EMPI at 8 milliamps. Dr. Troup's office called this afternoon. Katie is scheduled to go for her pre-op visit on November 24th and the surgery to replace the right bone flap is scheduled for December 2 at 8:00 am.
November 16 - Katie and her family attended church today! She was awake and appeared alert, especially during the worship music. For those of you know Katie, this is not surprising because Katie has always loved music and singing. Katie has had a good day today.
November 20 - Katie is continuing to make more and more sounds daily. She is also doing slight different movements with the corners of her mouth. She still has not actually spoken. Hopefully she will soon. Katie still has days where she sleeps a lot of the day and others when she is awake the majority of the day with occasional cat naps. She looks great.
November 23 - Katie went to church with her family today.
November 24 - Today Katie went for a vision test. This is for the doctors to check if Katie's eyes are actually capable of sight. We already know that she can see. Of course they (the doctors) want to have documented proof. The results should be ready in a few days. After leaving the vision test, Katie went to Wal Mart for a stroll through the store.
November 27 - Katie was awake and up most of the day today to celebrate Thanksgiving with her family.
November 28 - The results of Katie's vision test was inconclusive. The doctors want to run further tests later on. As already said in previous posts, we already "know" that Katie CAN see. When you read to her she looks at your face. When you turn the book for her to look at the pictures, she studies the images with with slight eye movement and then gives us 2 blinks for yes that she can see what she is being shown. She focuses on you when you talk to her. You do have to move yourself into her line of vision, but you can tell from her eyes that she is seeing us. Then there are occasional days when Katie seems less focused. On these days she also seems tired. Katie IS going to continue to improve and WILL be back up running and playing!! PLEASE KEEP PRAYING FOR HER DAILY!
November 30 - Today was a wonderful day to church for Katie. She looked beautiful as always.
December 2 - Katie had surgery at 8:00 am today to replace the right bone flap to her skull. Remember it (bone flap) has been kept alive since her accident in her abdomen. So keep in mind she had to have her abdomen opened in surgery in addition to her head! The surgery went great! Dr. Troup said she did terrific. Prior to surgery he had expressed his concern that Katie's scalp would be attached to her brain by scar tissue. But praise God this was not the case. And the piece of bone flap fit nicely, which had also been a concern. Hopefully Katie will be able to go home in a couple days. Thanks to all of you for your prayers, love and concern!
December 3 - Katie is sleeping because of anesthesia and pain medicine. Her right eye is swollen shut and there is a good bit of swelling in her face and head. The doctor says this is to be expected. Otherwise, Katie is doing terrific. She is a very strong little girl.
December 4 - Katie was discharged to go home this afternoon! As you would expect this soon after surgery, she still has a good bit of swelling and is sleeping most of the time. She is on pain medicine every 6 hours. All her vital signs are good. It is truly amazing when you stop and think about all this child and family have had to go through. She really is in the mighty and loving hands of God.
Katie right after her bone flap replacement surgery Dec '08.
December 24 - Christmas Eve! Katie has been coughing a lot today and has had more secretions than usual. We are hoping that she isn't getting sick. Some of her family has been sick over this past week. Please keep her in your prayers.
December 25 - It's Christmas and there is no doubt that Katie is sick. so far she is not running a fever and is able to cough to help keep her lungs cleared. Katie was up for a while today with her family. She had her picture made with all the wonderful gifts she received from family, Santa, and her many friends. Thank you to everyone for helping to make this a good Christmas for the whole family. All things considered, it has been a great day!
December 31 - Katie has been a very sick little girl over the past week. But thank God, she is much better now! She is hardly coughing now and her secretions are just about back to normal. It never turned into a nasty infection, so she did not have to take antibiotics. This is good because it shows that Katie and her immune system are very strong.
January 1 2009 - Happy New Year to ALL! Katie is doing good and looks magnificent. Tonight Katie and all her family piled in the van and went to see the Christmas lights at Hollywild. Katie really looked at all the beautiful lights. It was a fun evening for everyone. The doctor's office called a couple days ago, and Katie will be going for her CAT scan on the morning of January 7th. After the scan she will go by to see Dr. Troup to get the results of the scan and to see if she is ready to be scheduled for surgery to replace the 2nd bone flap.
December 13 - Katie got up early this morning and went to watch her sister Lynzie at her wrestling tournament. Katie seemed to really enjoy the adventure. Everyone was happy to see her out and about.
December 14 - Katie went to church this morning. Then rushed home for everyone to change clothes and was off to the Slater Marietta Christmas parade. Lynzie was clogging in the parade with her dance school. Brandon (Katie's brother) , dressed as Santa, walked and danced along with the group and handed out candy. Katie was there with her mom and aunt to watch from the side lines. On the way home from the parade, they stopped and bought the family Christmas tree. It was a very busy and fun day for Katie. She was really tired when they got home this evening.
December 15 - Katie went to Tigerville Elementary School tonight to watch her brother Brandon in the school Christmas program It was great for Katie to get to see so many of her friends that she hasn't seen in quite a while. It was also great for them to see her. She enjoyed the evening.
December 17 - Katie went to see Dr. Troup for her post op visit. It has already been 2 weeks since her surgery. The doctor is extremely pleased with how well Katie is doing. He removed all of her stitches. They are going to go ahead and schedule her for a CAT scan in January. They are suppose to call and let us know the exact date. If it looks good, she will be scheduled for surgery to replace the left bone flap.
December 21 - Katie went to church this morning. Everyone is busy trying to get ready for Christmas. Katie has her very own purple (Katie's favorite color) Christmas tree in her room. Please pray that this will be a memorable and wonderful Christmas for Katie and her family.
December 6 - Most of the swelling in Katie's right eye has gone down. She was able to open that eye for the first time since her surgery this morning . Her incision looks good with minimal swelling. Katie is still more sleepy and tired than usual. Which I guess explains why she seems more distant and less focused. She is also still on pain meds, but the dosage has been lowered a little and it is being given to her less often. Overall she is healing well and doing good.
December 7 - Katie and her family attended church today.
December 10 - Katie is slowly becoming more alert and focusing in on us more like she did prior to her surgery. She is only getting medicine for pain once in the morning and then again at bed time. She is up in her wheel chair for a few hours each day. She is currently off the Ambien therapy and the EMPI stimulator because of her surgery. She will be going back to see her surgeon for her post op visit on December 17th. Dr Troup said if Katie did well with this surgery, he would plan on replacing the other bone flap on the left side of her head after the first of the year. So far, she has done outstanding!
JAN.3, 2008 Lynzie has been reading to Katie a good bit during the Christmas break. Katie seems to enjoy her personal time with her sister.
JAN. 4, 2008 We took Katie to church again today. Brandon took over reading for me to Katie tonight while I made him some cheese toast. Also Carson (one of Katie and Brandon's best friends) came over and spent a couple of nights during Christmas break and she and Brandon took turns reading to Katie. They all enjjoyed it and Brandon and Carson can't wait until Katie's up and playing with them again.
JAN. 5, 2008 Katie's ct scan and app. for Dr. Troup were postponed for Wed. Dr. Troup had something unexpected to come up. It has been rescheduled for Jan. 19th.
JAN. 7, 2008 Katie's new teacher and speech therapist called and are planning on coming out next week to meet Katie and start working with her.
JAN. 8, 2008 Katie lost a baby tooth today. We bundled Katie up and went to Riverside to Lynzie's wrestling match tonight. I try to include Katie in as much as possible and make her life as normal as possible until it gets back to normal.
Jan. 10th Physical therapist friend "Billy" came over to work with Katie for a while today We sat Katie up and we all got to hug Katie. We took pictures of all of us togethe So we now have a new and updated family portrait. Billy has really been a blessing to Katie and our family. THANKS, BILLY FOR EVERYTHING!
Jan.11th We took Katie and all went to church again as usual.
Jan. 14th Katie kicked her left leg about 20 times after we put her in bed tonight almost as if she were pitching a little tantrum. Although she moves and stetches her arms and legs this was the most at one time and the hardest she has ever kicked. I have to believe this is a good thing.
Jan. 15th Katie kicked her right leg about 6 times this morning and sorta resisted her exercises. I'm not sure what all this means but here again, I have to believe it is a good thing.
FEB 8th 2009 Sat next to Katie in Church today and I was so happy to see her perk up during the music. For about 10 minutes she stretched both arms out and Pam and Lynn held her head as she sat straight up in her wheelchair. I was so proud to sit next to her and I remember wishing everyone in that church knew what a fantastic and incredibly loving person they had right there in the front row. God's gift to us all. (from Tom)
TUE. FEB. 10th- Katie went to see the eye doctor today. Since Katie's eyes weren't looked at by an optomatrist soon after her accident he didn't have anything to compare with to determine if her vision was better or worse. He did say that the optical nerves were damaged and that he thinks Katie can only see shadows and some colors, which was very upsetting. However I believe Katie can see more then shadows. (Lynn)
MON FEB. 9th- Katie's Birthday! Several friends called, came by or sent cards to wish Katie a Happy Birthday. Thanks Everyone! (Lynn)
SAT. JAN. 31st- Took Katie and Lynzie shoe shopping and stopped by the p-nut stand to see Tom. (Lynn)
SUN. FEB. 1st- Took Katie up to the school on a little family outing to practice ball with Brandon,Lynzie, Mom and Dad. (Lynn)
Feb 25-09 So glad to be back reading to Katie. It's the best part of my week. Seemed she was paying attention. Her eyes stayed on me or the pictures
in the book for the whole time. She saw Dr Troup today (2-25) who wants to replace the rest of her skull in about 2 weeks.
2-27-09 Read to Katie about 3 hours and her eyes stayed on me but I had to get into her field of vision. Sadly, she did not move much at all and did not follow me with her eyes when I moved. Also, it seemed like she had to be suctioned as nuch as ever. Some days
are better than others for Katie. It's time for more good days I pray.
3-04-09 Read together about an hour today and Katie was intent on both the story and me. She moved around in her wheelchair more than usual. She was making some new small adjustments I hadn't seen before, What was even better, I heard what Lynn had told me has been happening, Katie yawned and I heard her vocalize it. Just a couple seconds,but it was a voice I hadn't heard in almost a year.
Aunt Debra and her daughter Elizabeth came by and I took photo (most recent) just after Katie dozed off. Katie has been having some urinary infections and tests came back today they have cleared up. She will be going for surgery to replace the final skull portion very soon now. This is what we have been waiting a long time. May God watch over Dr.Troup and Katie while we ask you pray really hard once again. -Tom
Mar 13 2009 While reading with Katie today I notice even more, almost constant facial movements. Little grimaces and very slight head turnings. More animated than ever which is exciting to see. They had just put her to bed (see Most Recent Photos) when it is sometimes her most alert moments.
They have again postponed her surgery due to continuing flu symptoms showing up in the PICU at Greenville Memorial. Perhaps in a couple more weeks.
The EMPI is on twice a day @ 4 hrs per @ 8 milliamps.. When it comes on Katie's Trachea needs more suctioning. Her left eye has always been slightly redder than her right. Today it seemed even more so. She has gone thru more than most of us will ever know, with courage, grace and love. -Tom
Mar 25 2009 Another visit with Katie shows her still making more facial and body movements. I started reading to her before the RMNS was started and just after she was put in bed. This seems to be when she is most aware. Possibly because of all the movement and prep getting her from wheelchair to ready for bed, with a change in enviroments. I did ask her if she wanted me to read to give me two blinks and right then she slowly blinked twice. Not like regular blinks but deliberate slow blinks. I went to get the book and she continued to blink a few more times. I'm almost certain she understood me, but possibly still cannot control her eyelids well,or possibly not sure if I saw her. This is my best guess and hope.
At first Katie seemed intent and watched me carefully as I read. After a few minutes Lynn connected up the RMNS for her evening session and Katie stayed interested about twenty more minutes and then began to detach and her eyes sort of looked past me and went into her own train of thoughts. My feeling is that it is harder for Katie to focus during this therapy. Also, her ability to turn her head has definitely improved. I have seen her turn both directions several times. Often now it feels like she is trying so hard to talk. Her mouth moving as she seems to strain toward you is an amazing and unnerving thing to see.
Katie wants to come back to us and is fighting with everything she has. Knowing this incredible young lady
has been a great honor and the most sobering thing in my life. -Tom
Mar 27 Today (the one year mark since Katie's accident) I finished reading 'Heartland' with Katie and she stayed tuned in so to speak. Her red eyes have cleared up a bit and she did respond with blinks to several questions from Lynn and Louise. Again after about 30 minutes of the RMNS she became a bit distracted. Her pulse around 70 and her oxygen around 95-96. She continues to appear like she is trying to talk on several occasions. I noticed tonite that her right and left eye can sometimes seem to look in slightly different directions. I am amazed about how often the books I pick out, though not knowing what the story actually is when I get them, seem to relate to Katie's present situation or former life most of the time. Something else new is Katie has been sort of biting on her lower lip lately. Not hard,but just new mouth movements.(see Mar 20 video here) New awareness maybe.
Apr 1 Katie seemed as alert as ever but was producing an unusual amount of extra saliva and needed to be suctioned almost constantly even tho she was wearing her patch. Do not know why. Her mom is running non-stop trying to keep things under control with little help it just seems to keep getting harder and more stressful. Please pray things will improve, everyone needs a break with no let up in sight. I don't know how they can keep this up.
No word on when the next surgery but should be soon now. A great hope is that Katie may have some changes for the better post surgery with her skull complete for the first time in a year.
As I read Katie did watch me and look at the pictures I held up. I watched carefully as her eyes seemed to move over the pictures and she did respond twice with eyeblinks when asked if I should keep reading. Her right eye is reddish again. -Tom
Apr 8 Katie continues to make more facial movements...see todays video here. She was again today making abundant saliva secretions requiring more suctioning. I cannot imagine what it must be like to lie there waiting to start choking again every few minutes. Katie's devoted mother is running 24/7 trying to keep things together with very little help. God help the Doll house.
Apr 10 Found Katie sitting in her wheelchair looking out the front door today. When I starting reading she began to move herself forward while lifting her legs a foot or so while making very dramatic facial expressions. After an hour she sort of gave up and became sleepy. Her eyes never close all the way and she would open them wider every few minutes like she was checking to see if I was still there. She used to do this back in the hospital, but then there was none of the other movements or expressions. Her heart rate was elevated for a few days but has now normalized. I know it comforts her to have someone there reading,even when her eyes are almost closed.
Apr 22 Today Katie was slowly brought to a standing position (see video here). It is very difficult for her as she has been bedridden or in a wheelchair for over a year. You can hear her voice just slightly as she expresses some fear. I'm not sure she understands what is happening during this. Katie reacts to some things but slowly.
Amazingly, Katies left calf and foot are warm to the touch and her left toes are moving most of the time, while at the same time her right leg and feet are cold and seldom move. As the right side of the brain controls the left side of the body and vice versa, could it be that replacing the left skull portion may revitalize the right leg? We are hoping this will occur. Katie's left arm is also more active then her right. The fact that Katie's scalp may be laying on the left of her brain might be causing the right side weakness. Of course I have no way of knowing this as a fact. I do have a lot of hope that after recovery time we will see more and maybe even back to her eyes following you as they did just prior to Decembers surgery.
Katie's mom is totally devoted but pushed beyond what anyone can imagine. I found a machine that could be a real help to Lynn and may help Katie immensely. It is called the quadriciser and does the work of 4 therapists. It has had excellent results for TBI patients but costs a lot. I am hoping we can find some way to get this equipment for Katie. She needs some dramatic change soon and I believe this could help. The website for this machine is here.
Apr 28 Once again the surgery has been postponed a couple of weeks. The surgeon cannot be around during Katie's recovery time,which is what he much prefers. Also Katie has caught a cold and is coughing up more than normal.
She seemed to be distracted when I was reading to her, but this was probably the coughing which would have to aggravate anyone. I believe she is putting more deliberate effort into her coughs. She seems to feel them coming and takes deeper breaths in advance whereas before they just surprised her in mid-breath. This must be a good thing.
Apr 29 Katie has been having a really tough time with her cold, the pollen and possibly some storming. She is almost constantly struggling and uncomfortable looking. Moving more than ever but there are some unhappy things like her feet turning inward somewhat and her hands sometimes wanting to fist and draw up. They can clench so tightly it's amazing the strength. It is very difficult at times to get her little hands into the supports. Her right eye won't blink or move much often getting very red, while her left seems to work somewhat independently (see photo). I watched her cough huge amounts of clear phlegm many times today,while much of the rest of the time she is trying to cough. Pray things will alleviate soon. She is fighting so hard.