I will never forget the day our lives changed forever and would NEVER be the same again. Kolten, our fourth child was born a very healthy 8lbs 1oz, on June 22, 1996. I was so relieved when he arrived because my entire pregnancy I had a terrible feeling there was something wrong with him. After the doctors said he was healthy I pretty much blew it off as just being a worrier. When we were still in the hospital my husband Jim and I noticed a couple of white rough birthmarks. One was on his stomach and one was on his back. We thought he just took after his Dad and oldest brother Kyle because they had several white birthmarks also. When he went in for his two-week check-up I asked his pediatrician what she thought about the birthmarks she figured just what we did that they were just birthmarks.

Three months later, a day we will never forget, our lives changed forever and would never be the same again. It was a Wednesday on September 25, 1996. It all started when Kolten was just three-months-old, he slept in very late one morning. I decided I had better wake him up to see if everything was all right. I woke him up and gave him a bottle everything seemed fine. Then shortly afterward he vomited up what seemed like the entire bottle. I thought that he had the flu. I took him into his room and was changing his diaper when I noticed he was shaking, but I just thought he was cold. I called the doctor’s office and the nurse said because he was so young that a doctor should take a look at him to make sure everything was ok. I took him to the doctor’s later that afternoon and the doctor thought it was the flu but ordered some blood work to be sure. As the lab technician took his blood he never cried, the technician told me "this must be a pretty sick little boy"; I thought well he does have the flu. I took him back to the doctor the next day for a re-check and everything looked much better. We thought this short illness was over and we went home. Little did we know it was just the beginning. By Friday evening we knew there was more going on than the flu but we didn't know what. A once happy little baby was staring right though us and not responding at all. I called the nurse once again and she said to bring him in right away. We rushed back down to the doctors' office. The doctor came in and took a look at Kolten and thought we all thought he was breathing funny. She ordered a chest x-ray. When she took a look at the x-ray she said he had viral pneumonia. We thought finally we got to the bottom of it and took our son home. Throughout the night Kolten was having these episodes where it seemed like he was having trouble breathing, we thought this was just part of the pneumonia. I stayed up all night watching these episodes go on and on.

A couple days later Kolten did not seem to be getting better. Sunday morning, during church, Kolten grabbed my shirt and would not let go. My husband had to pry his hand open just to get him to let go. I knew something was not right. We took him back to the doctors that morning and while we were in the waiting room he had another one of his weird breathing episodes and grabbed my shirt so tight. As we sat there we got to thinking that these episodes looked like some sort of seizure. Well by the time we went back to see the doctor the episode was over. My husband and I started describing what our son was doing and the doctor agreed that they sounded like a seizure. He called a radiologist about the chest x-ray Kolten had and they said there was no sign of pneumonia. He told us to make an appointment with a neurologist at Children's Hospital the following day. For some reason we were not very concerned about the seizures, I don't know why, I guess we thought they would go away as quickly as they came. When we got home we decided to videotape these seizures to show the neurologist when we went in to see him.

By the next morning Kolten seemed to be much worse. His eyes were deviating to the left, drooling and not responding at all. We decided not to wait and make an appointment but take him to the Emergency Room at Children's Hospital in Denver right away. As I walked in the door I stood there for a little bit and finally a nurse asked if she could help me. I told her I thought my baby was having a seizure. The nurse took my baby from me into a room so fast that by the time I caught up with her she already started undressing him and was getting an IV ready. Now I was scared, mainly because everyone in the room seemed so nervous. Everyone was asking so many questions my husband and I couldn't think. When they asked what the seizures looked like we just gave them the video camera with the tape we had been making, it made that part much easier and became very useful later. The doctors could not figure out why this seemingly healthy baby was having seizures. They told us they would have to do a spinal tap to rule out meningitis. They would not let us stay with Kolten so we had to go into another room where we could still hear him crying. I prayed so hard in that room that everything would be all right. When the doctor came back he told us that the spinal tap would probably come back negative so he wanted Kolten to have a MRI (magnetic resonance imaging) done on his brain. Later they gave Kolten some medication that finally stopped the seizures and let him sleep. Later that morning, Kolten had an hour-long MRI done. Then we waited. They put Kolten into a room to keep him at least overnight. We waited what seemed like forever for the doctor to come in with the results of the brain scan. As soon as the doctor walked through the door I could see on his face that he had bad news. He explained to us that Kolten had what looked like swelling in his brain and two small areas of bleeds. We tried to think of what could be causing this to happen to him but came up with nothing. We did not know what all this meant but I remember him telling us to call our families and to have them come down to be with us, I knew it wasn't good. My husband was the strong one so he called our families and told them the news. All I could do was curl up into a ball on a small couch in the room while I cried and pray for Kolten to just be ok. I remember a nurse came in to talk to us and told us the words we still live by today "take it one day at a time". The next day, the neurologist came in to talk with us and said there was going to be a neurology conference later that day and wanted to present Kolten as a case study and asked to use the video tape we had made of his seizures. The neurologist wasn't so sure that his brain was swollen or there were bleeds but possibly something else was going on. Later that day a group of doctors came in asking us a lot of different questions. They wanted to know if anyone in our families had white leaf looking birthmarks on them. We immediately thought of my husband and our oldest son Kyle. They asked if Kolten had these birthmarks, we told them yes, but his were rough. After looking at Jim and Kolten with what's called a Wood's Lamp, which makes the birthmarks show up even brighter, they told us that Jim, Kyle and Kolten have a rare genetic disease called Tuberous Sclerosis Complex (TSC). TSC manifests itself in many different ways. Some people like my husband are unaffected, our oldest son has some learning difficulties and it caused Kolten to have seizures. We finally had an answer! Kolten's TSC caused tubers in his brain (patches in the brain that don’t develop normally), which were causing the seizures. They are finding that with each generation TSC seems to become more severe. Our pediatrician said she never had a patient with TCS and when she went to look it up in her medical book there was just one small paragraph describing TSC. There are so many undiagnosed cases because doctors are unaware of the signs like the birthmarks, until something like seizures start. The neurologist told us there are medications to stop the seizures and we would have to find the right combination.

Kolten was put on Phenobarbital and sent home a couple days later. Kolten was still having between 10-40 seizures a day. I decided to write down each seizure to see what medications were working and to see if there was a pattern to his seizures. After the Phenobarbital did not work we tried a couple different medications but none seemed to work. In November, the neurologist suggested that if the medications didn't work there was always the option for surgery to remove the tuber in his brain causing the seizures, but he said that would be down the road and we still had some other medications we could try. When the doctor said the word "surgery" I felt such calmness come over me. I think God was telling us that this was going to be our answer, even though it seemed so drastic. A couple weeks before Christmas the neurologist decided to try Prednisone. It is a type of steroid that has worked on stopping seizures in other children. At first we didn't think it was working then two days before Christmas he just stopped seizing. It was the best Christmas present we could ask for. It was a happy time but not one to last. In January 1997, the doctor decided to start to take him off the medication because it was very hard on his little body. The medication can mask the symptoms of an infection and can also suppress the immune system. We were counting the days that Kolten would finally be off this drug. Kolten was losing weight and no longer the husky little baby of a few months before. There were days that I could barely get him to drink sixteen ounces of formula a day. Then in February Kolten was sick with the flu and had a fever. My husband and I laid him on the couch to give him some fever medication and we both saw what we thought was a seizure. Our hearts sank; we could not believe the nightmare was starting again. Another week went by before we saw another seizure but we knew they were back. The doctor decided to put him back on Prednisone. As much as we hated it we knew that it was the only way to stop his seizures. I remember every weekend we were running to the doctors because his immune system could not fight infections. He would spike a fever and he needed to be checked to make sure there was not a more serious infection going on. Every time we went to the doctors they would have to do blood work to rule out any serious infections. I think he was getting used to needles he was poked so often. Kolten caught every "bug" that was flying around in the air. Later the neurologist told us about a seizure medication called Vigabatrin but it was not FDA approved in the U.S. He told us that it was having good results controlling seizures in other TSC patients. We thought about it for awhile then decided we needed to try something different because none of the medications we were trying were working. We finally received the medication from Mexico and started right away. After he was on Vigabatrin and Tegretol for a few weeks we slowly took him off the Prednisone again, we held our breath. This time the seizures did not come back. Later we also took him off the Tegretol. Finally he was only on one medication and not having seizures. We thought this was our miracle drug. Again this was not to last. Kolten started seizing again that December. From that point on we would never get seizure control again no matter what drug combination we tried. Kolten was having only 8-10 seizures a day now but we knew it was affecting him developmentally.

In October of 1998 we decided to start testing to see if surgery was even an option. If the seizures were coming from only one side of the brain, surgery would be considered, if not there not many options left. In November, Kolten went into the hospital for a continuous EEG and video monitoring to record his seizures. We were there for two days when the doctor said we had enough seizures. Before we left the hospital the neurologist had good news, he told us that all of Kolten's seizures were coming from the left side of his brain and mainly in just one area. Even though we received the news we wanted the doctor's were still a little hesitant to consider surgery. The area of the brain the seizures were coming from was near the motor cortex. The motor cortex controls all arm, hand and leg movements. Kolten had great use of his right leg and arm and his hand was a good helper hand. If we were to go ahead with surgery he could lose the use in his right arm and hand and possibly walk with a limp. The neurologist decided they wanted a better idea of exactly where the seizures were coming from so they told us to go to the Children's Hospital in Detroit, Michigan where he could get a PET (positron emission tomography) scan. This would show the doctors the focus of his seizures and let us know if it could be safely removed.

In March of 1999 we headed for Detroit. The neurologist performed the PET scan and said we would go over the results the next day. It was so hard to wait. We were finally going to know for sure if surgery was an option or not. We went back the next day and he showed us the results of the scan, it was more news than we expected. He told us that the tuber involved about three-quarters of the left side of his brain. He had seen a lot of patients with TSC, but had never seen a tuber as large as this. He told us that surgery was an option but the neurosurgeon that would perform the surgery would have to remove almost the entire left side of his brain, a hemispherectomy. We were in shock, but it was the news we wanted, that surgery was still an option. At this point it was Kolten's only hope to stop his daily seizures. He explained that with a young child the remaining right brain usually takes over the functions of the left. In Kolten’s case the neurologist thought that the right side had already taken over many of the functions, mainly his speech, because the left side was already so abnormal.

When we got back to Denver we talked with the neurologist and considered the risks of surgery, mainly the loss of use in his right arm. At first were not sure if we could live with the thought that we caused Kolten to loose the use of his right arm. The neurologist suggested we not go ahead with the surgery; he felt the risk of leaving Kolten paralyzed in the right arm was too great. He told us to just keep trying different medication because there were new ones now that we hadn't tried yet. We tried a couple more medications but again they did not work. Finally, in September, we decided to put our trust in God and told the neurologist WE were willing to take the risks of surgery. We felt there were no other options. We tried ten different medications and none of them were stopping the seizures. We now felt we could go ahead with the surgery thinking we tried everything else and surgery is what we were left with. We just wanted to give Kolten a chance at a normal life. He was just falling farther and farther behind in his development. At three and a half he only had about thirty words and speaking only a few word two-word sentences. Later we met with the neurosurgeon and he explained the surgery and the risks. He felt very confident that he could stop the seizures. Then we set the date for December 9, 1999.

Well the day came quickly but we felt we were ready. We had been waiting for this day for over a year. We drove to the hospital early that morning. I could hardly look back at Kolten in the car without thinking what are we doing to our child and are we doing the right thing? I felt like I was going to be sick. When we got to the hospital the nurses did the pre-op work. Then another neurosurgeon came in to talk to us about the surgery. He told us they would make a "Charlie Brown" incision, it would start at one ear and zigzag across the top of his head to the other ear. He told us again the risk of the surgery and the complications that can occur. At 7:20 he had a seizure and my husband and I remember thinking is this going to be his last seizure? At 7:50 the nurse said it was time to go to surgery. They said only one parent could go back with him, my husband let me go. I remember carrying him in my arms not wanting to let him go. Kolten was so unaware of what was going to happen to him, but I was also thankful for that. I laid him on the operating room table; the nurses placed the sleeping gas over his face. He struggled for a little bit then finally gave in and fell asleep. The nurse said I could take my mask down and kiss him good-bye. I gave him a kiss and told him I loved him and then told the nurses to take good care of him. They said they would. I went back out to the waiting room where my husband was waiting and we just held each other. Now the waiting would begin. I think the strength I was asking God for came during surgery. I had this very calm feeling come over me that stayed with me the entire surgery. We had wonderful family and friends that stayed with us throughout the surgery. A nurse would call about every hour to update us on how the surgery was going. It made the wait a little more bearable to know how thing were. Eight long hours later the surgery was finally over. The surgeon came out to talk to us and explained the surgery. He said everything went well. He said that he removed about eighty- percent of the left side of Kolten's brain. They were able to locate the motor cortex and left it in but cross cut through it and also a small portion in the front for a cushion. They also disconnected both sides of the brain from what they did leave. He would have no brain activity on the left side of his brain whatsoever. He said that the empty space left by the surgery would fill up with spinal fluid but does not act the same as the brain for cushioning. So for that reason he told us that Kolten would not be able to play certain sports such as wresting, football and soccer or one of his favorite things, jump on a trampoline. The reason was that the brain could shift and cause hemorrhaging which could be life threatening. We thought a small price to pay for no seizures. When we went back to see Kolten in the PICU, I was prepared for the swelling and tubes but not for how pale he was. He looked like there was no life in him. There was a lot of irritation in his brain right after surgery causing the right arm to shake uncontrollably, but by the next morning it was much better. We were not allowed to sleep in the PICU so we went to our room we had in the hospital and would sleep for an hour and then go back and check on him. The nurses took very good care of him I felt he was in good hands. Two days after surgery Jim asked Kolten where his nose was and he pointed right to his Dad's nose, it was a good sign and such a blessing. Kolten was in the PICU for two days and transferred into his own room where he stayed for 10 more days. The swelling was at its worst by the third day and his left eye was swollen shut. The neurosurgeon warned us this would be the worst day for the swelling. He was surgically ready to go home 4-5 days post-op but he was running a fever and the doctors weren't sure if it was due to the excess blood in his brain from the surgery or if he was developing an infection. They did a couple blood tests to check for an infection and they all came back negative, but we still chose to stay until the fever was gone. While in the hospital we started wondering if we made the right decision. Kolten wouldn't smile at all. He seemed to hurt so much if we tried to move him. All he did for the first week was moan, and try to cry. He would want held than he would want right back in his bed. It was so hard to watch him in what we thought was pain, but the doctors told us they didn't think that it was pain because they gave him pain medication but it was more just the brain healing. The therapists would try to work with him but everything was "no" he just wanted to be back in his bed.

Finally, five days before Christmas the fever was gone and we couldn't wait to get him home. His brother's Kyle and Kevin and sister Kalina wanted him home so bad. The morning we went home the surgeon took him off all his seizure medications. Normally children stay on their medications for at least six months but I guess it was the only way to tell if the surgery was a success. At first Kolten was not the same little boy at all. Before the surgery he was on the go all the time and so friendly. Now he would just lie around, not responding much, no smile, and no personality. Later he would just sit on the couch most of the day where he felt he was safe, from falling I guess. Any sudden movements would scare him. Two days later he was showing signs of the old Kolten again. One day he started smiling, then the next day he was laughing a little and the day he said, "I love you" and asked me for hug, I cried, I knew Kolten was still the same little boy. The only thing that was different was that he was not having any seizures. Wow what a miracle! Kolten did lose some use of his right leg. He now wears a brace to help him walk. He is always happy to tell everyone about it. He has no peripheral vision to the right, which does not seem to affect him too much. He also lost the use of his right arm and hand. His brain is still healing and the doctor told us it would take a year to fully heal and know exactly what will come back and what will not. He is gaining more use of his arm all the time and could possibly regain almost full use, only time will tell. Even if he does not regain anymore use of his right arm we are so happy with our decision. As hard as it has been we know we made the right decision for Kolten. I feel as if Kolten has two birthdays now, one on the day he was born and the other is the day of his surgery. Kolten is now in occupational, physical and speech therapy once a week. He can pedal a tricycle. We placed a boot on the right pedal so we could tie his foot to it so it will stay on. He attends preschool twice a week with many wonderful teachers. He interacts with his classmates and wants to play with them; unlike before the surgery he was in his own world. A mother at preschool told me her daughter said "Mom, Kolten talks to us now." He is learning so much so fast; he is our little parrot. He tries repeating everything he hears and wants to know everything that is going on. It has only been four months since the surgery and he now has many two-word sentences and several three and four word sentences too. He seems to be gaining months in a matter of weeks. We never know what new thing he will be doing the next week. Anyone who is around Kolten for very long just seems to falls in love with him and he returns that love to everyone. He is amazing!

I wrote this story because I want people to know about Tuberous Sclerosis Complex. I would like to let people know there are other options besides medication for seizures, but sometimes you have to look for them. Surgery is not for everyone with seizures but when it is possible I think it can be very beneficial. And I want people to know how much we love our little boy who was able to overcome the huge obstacles that were given to him in life. He is our little miracle!

Update 12/9/2000

It has been one year since his surgery, and what a year it has been! We are celebrating his "other" birthday today. He got a present and we will have cake tonight. We truly feel he has another birthday on Dec. 9. We could not be happier with the way things have turned out. Kolten has still not had a single seizure. He has picked up on so many words in the past couple months. He has many four and five word sentences. He will sing simple songs with most of the words right. He loves music. He is now attending preschool four days a week, and has fun with his classmates. He knows all of his classmate's names. On Dec. 18 he will be going back to the hospital for another minor surgery. It is called a heel cord release. The surgeon will make a few cuts into the Achilles tendon to lengthen it and he will be in a cast for three weeks to let it heal in the right position. He still has quite a bit of tightness in the right ankle so we are hoping this surgery will help make his foot flatter. It will not correct the turning out of his ankle so he will probably still need a brace for that. His right arm is coming back very slowly. He can raise it up about half way. He is able to make a fist and is working very hard to get his fingers to open when he wants them to. At the same time as his surgery he will also have Botox in his right thumb and forearm. Hopefully it will release his thumb so the thumb will stay out when he goes to grab something and give him more flexibility in his forearm so his is able to turn his hand over. In January we go back to see the surgeon and have another CT scan done. Where they cut the skull for the surgery, it seems to not be healed together yet. They told us this does happen sometimes so we just have to watch it. It should eventually heal on it own. He will be evaluated in January sometime to check where he is at mentally. I'm sure it is somewhere close to three-years-old. He is now potty trained, which I wasn't sure, would ever happen, but he amazes me each day. Kolten is still very impulsive but we are working on slowing things down a bit. He is not near as aggressive as he was a couple months after surgery I think that his being able to tell us more of his needs has helped tremendously. He loves being able to tell us what he wants or needs. He is such a happy little boy and so full of love. He truly is amazing.

Update 3/27/2001

It has been just over three months since his heel-cord release surgery. It has worked great. His ankle now turns inward instead of turning outward, which we can correct by building the inner calf muscle. We have been using electrical stimulation on his inner calf muscle to help build it up faster. He has walking better each week since the surgery. We knew going into surgery was going to be one step back and hopefully two steps forward. We are very pleased with the surgery and think we made the right decision. We saw the neurosurgeon in January and he was very pleased with Kolten's progress. He told us that where his skull has not come together will probably stay that way and not cause any problems. He also had a CT scan done which was very impressive to look at. To think that he is walking, talking and acting like a normal boy with only half a brain is amazing each time we think about it. Kolten had an EEG done in February. It showed no brain activity at all on the left side even though they left the motor strip and a portion of the frontal lobe. There was also no seizure activity what so ever on the right side, which was a sigh of relief. We also saw the neurologist that day and he was very impressed also. He said we no longer have to see him from a neurology standpoint, but he did want to see him in a year or two just to see how he is doing. We also saw a Neuropsychologist in February. She tested Kolten in several areas and put him at about a 2-1/2 year old. He was higher in some areas and lower in others. She never did see Kolten before his brain surgery so she really couldn't appreciate how far he had come. I guess that pretty much takes care of the last three months, it has been crazy, maybe things will now slow down a bit, (yeah right). If you haven't signed Kolten's guest book I hope you will, I like knowing who is looking at his site.

Update 12-9-01

Wow, two years since Kolten's surgery. I can still remember the feelings of that day; it still brings tears to my eyes. It was the hardest time in our lives. The surgery seems so long ago. I have almost forgotten the days with

seizures, but I can still see them in my mind when I think back, but I try only to look forward. It is hard not to look forward with all the amazing things Kolten is doing these days. I think his future is going to be extremely bright.

He is in preschool four days a week again this year. We thought waiting one more year before he started kindergarten would give him a much better start to his school days. Kolten has learned all his colors, can almost count to twenty, and knows all his new friends' name at school. He has calmed down quite a bit in the past few months. He has the most amazing preschool teacher this year, Ms. Lynne, she is wonderful with him. She has such a caring touch with him and yet gives him the discipline he needs to help him control his own behavior. He is talking up a storm and has a memory that amazes me constantly. He has a little better use of his right arm. The other day he was using his right hand to put mushroom shaped pegs onto a pegboard, he was so proud of himself. He is learning to dress himself. Sometimes he can take his own shirt off and put one on. He can put his own pants on as long as he doesn't put both legs in one hole. He loves riding his tricycle. We decided to take the boot off we used to strap his right foot into. One, it became dangerous when he would fall over and also now he can go ride his bike whenever he wants without have to have the boot put on. He pedals his bike with one leg and one hand, but boy can he go fast. He can spell out his name K-O-L-T-E-N. He loves to loves to spell it for everyone. He can also say (sing) his ABC’s. He loves watching movies. His favorite is Shrek, and George of the Jungle. He memorized most of the words in both. We celebrated his "special" birthday this year with a toy tractor with a plow and had a birthday cake. If I ask "why is it your special birthday" he will say, "Doctor fixed my head." So I think he understands more and more about how special he is. I can't wait for the day he can understand fully what a remarkable little boy he is. I want to thank every one of you for the kind words you have written to Kolten and the encouragement for our family. It makes me glad I took the time to make this site. I hope it continues to give support and encouragement to others. I know it can be a lonely and sad time, but when you can share your experiences with others that know what you are going through it can make it seem not so overwhelming.

Update 6-22-2003

It has been quite a while since I have updated so I thought this day is a good day to do it. It is Kolten’s seventh birthday today. In May Kolten graduated from kindergarten. It was a great day! He had a wonderful year in kindergarten this year. He had a wonderful teacher and Special Ed teacher and many others that helped throughout the year. Kolten is always so blessed with the people that come into his life. He learned all his letters and sounds. He can write most of his letters and was starting to learn to read. Reading is going to be a bit difficult for Kolten because that is a “left brain” thing. We are putting pictures with the words and he has been doing very well with them. He can count to 39 and writes to 19. Kolten’s aggression and impulsivity hit a high point last spring and after much thought we put him on Ritalin. The first day I gave it to his I sat and cried. I told myself after all he went through with the surgery I would never put him on medication again. Once we began to understand his behavior and that he really did not have any control we found this was best. Everyone in the family was suffering with the hitting and biting including Kolten because I knew he wanted to be good he just did not have any control. The Ritalin slows him down enough that he has time to think about his actions.

At the end of July Kolten will be going in for surgery once again. This time for a rectus femoris transfer. The doctors will take one of the quadriceps muscles and transfer it behind Kolten’s knee. We found this needed to be done through a gait analysis. He will be in a full leg cast for a long four weeks with no weight bearing. Kolten falls quite a bit and walking long distances is very tiring for him as well. Hopefully once Kolten is healed he will not walk with a limp and walking will become easier.

Kolten will start first grade this August. He will be in school all day which makes me very nervous, so many things to think about, but it always seems to work out so well. He still does not have much use of his right hand, but can make it work for him for some things. He will pull his thumb out and put things in it. Our hope is that as he gets older he will realize he needs that hand and will use it more for a helper. He can now dress himself except for his right sock. His toes just don’t work to get them started in the sock. I hope this brings everything up-to-date. I will update again after his surgery. I wish all of you the best.

Update 10-10-03

It has been just over two months since Kolten’s leg surgery, and six weeks since he had his cast removed. Everything went very well. It took a couple weeks for Kolten to start walking again after the cast was removed. I thought he would want to walk right away, but Kolten is so accepting of things that he just figured that scooting across the floor was the way his life was going to be so he just went with it. He never complained once about the cast being on or not being able to walk, but again that is Kolten’s never ending spirit. He is at the point where he was before the surgery walking with a slight limp, but now I am able to see the leg actually bending. The doctor told us it would be up to four months to get to this point so we are very pleased. With continued therapy it will only improve. He told us we can see improvement for up to a year.

Kolten did start first grade in August and all is going very well. The kids in his class are very accepting of him this year. I don’t think that it hurt that he started school in a wheelchair and the kids loved taking turns pushing him around. We added another medication this summer, Risperdal. This medication along with the Ritalin has been wonderful. He is on very low doses of both the Ritalin and Risperdal, so the combination of both must be just enough.

Just a few weeks ago Kolten started READING! I am so excited. I just love sitting down with him and having HIM read to me. It brings tears to my eyes to hear it. It is very simple stuff but he is reading and retaining. He has another wonderful teacher this year. First grade is much more structured than Kindergarten but he is adjusting very well. I think that brings everything up-to-date, I will update more when changes occur.

Update 7-19-04

I can’t believe how time flies, here it is over nine months since I last updated. I am so excited; Kolten’s behavior has improved greatly, so much so that we have taken him off the Ritalin. He has been off it completely for about two weeks now and he has been awesome! I have wanted this to happen since the day he started on the Ritalin. I have MY Kolten back. He is the loving, sweet, happy boy I knew he was. It was almost an overnight change. I understand that his right brain matured enough that it is taking over the behavior function of the left side, the impulsivity and aggression. He is still on Risperdal but we are slowly taking him off that as well. Kolten will start the second grade in less then a month. I can’t wait for him to go back and show his teachers the change he has made; they are not going to believe it. When I told his Special-Ed teacher I was going to try and take him off the Ritalin this summer she just gave me a smile and said let me know how it goes. I also read a great book called “Ritalin is not the Answer.” It was very helpful with wonderful discipline tools that I used for Kolten.

Kolten is going under the knife once again, this time for his arm and hand. We do not have a date yet but it is in the works. I think this procedure will give him a great helper hand. The position it is now it is not even close to a helper for him. The surgery on his leg has gone very well. He is able to bend his knee without dragging is foot. Because we had such success with the leg surgery I think the arm will turn out just as well. God Bless!

Update 9-24-2006

I can’t believe it will be ten years tomorrow when this whole journey began. Kolten is doing great and still seizures free. I guess I will pick up where I left off on my last update. Kolten had a tendon transfer on his right arm, fingers and a thumb web reconstruction. Everything went very well and he has much better use of his arm then ever before. It is not perfect by any means but is better than before. He is able to turn his arm over and we are still working on him being able to raise his wrist, which was coming along great then he fell at field day at school and had a buckle fracture in his hand, but we will start therapy again soon. Kolten is now in fourth grade and won’t admit it but he loves school. We now have his aggression under control with the help of discipline techniques and medication, he is so much more pleasant to be around, it was very tough for awhile. For awhile when he would get mad he would get very mad and hard to control. He would bite, scratch, claw and kick. I knew it was from him not having the left frontal lobe to control his aggression and impulsivity but it was still very hard to deal with and I would take it all very personal, after all I am the mom. Kolten is doing wonderful with his reading and he is improving all the time. He is now reading chapter books; it still makes me smile to hear him read. Kolten is an awesome speller. He can look over his spelling words and in a couple days be able to spell them all. Math is coming along for him as well and he just started to write cursive this year. How blessed I am to be his mom. Thanks for reading and I will try to update a little more often.

Melanie (Mom)