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Matthew's Journal Page 1
This page contains my earliest Journal Entries. They truly are an expression of the my early emotions and disappointments in learning to deal with Tuberous Sclerosis.
Table of Contents
"He's having a seizure! Matthew....Matthew!" I called to him out loud, snapped my fingers and clapped my hands. I just wanted him to turn his head or change that expression on his face. It was so scary to see him this way. I explained to the doctor what he was doing before during and after the seizure. I had just taken him out of bed and put him in his highchair for breakfast. I sliced his banana and put it on his tray. Normally, he would have devoured it immediately. He just sat there sucking on his pacifier. I thought he just wasn't quite awake yet so I took the pacifier out for him. He put it right back into his mouth. I just shrugged it off and walked away for a few seconds. When I returned, he popped the pacifier out of his mouth and I thought to myself "Finally, he is going to eat. That's more like it!" As I turned to take another look at Matthew, I realized he was having a seizure. Surprisingly, I remained perfectly calm. I made it a point to make pictures in my mind of exactly what he was doing, even though I was in shock that this had to start happening now. I noticed he was tilted to the left in his highchair and staring off to the right with his eyes glazed over. His right arm was swaying back and forth in front of him loosely. It was as if he was reaching for something, but he had no control over that arm. His head made short quick jerks in a side to side motion (as if shaking his head no). I realized he had no control over what was happening. It was the longest 20 seconds I had ever experienced I think. Thank God it didn't last longer! He was so sluggish for hours afterwards, which is apparently the norm with seizures.
April 20, 2001Second seizureAnother seizure...Matthew had another seizure. This one occurred at the same time of day as the seizure on the 16th. I had just gotten him up and put him in his highchair to eat. This time it did not seem to be as 'involved' as the previous one. He only stared and chewed. It seemed to last longer but that could be because I picked up on it sooner. I did not maintain my composure so well this time. I was such an emotional wreck already, and this just pushed me over the edge.I called to him. "Matthew...Matthew!" I started to cry. I finally yelled at him. "Matthew don't do this!" I knew that he couldn't hear me but I felt so helpless and I was so mad that this was happening to him! We got in to see the pediatrician within the hour. He called and got the EEG report from the neurologist who read it. Nothing unusual was found there. The neuro suggested that we put him on phenobarbital, and for whatever reason it was the last thing I wanted to use. The pediatrician suggested Tegretol as his first choice for fewer side effects. I have decided to wait and see Matthew's neurologist in couple of weeks. I am hoping the seizures will not get worse or more frequent. I guess I am still hoping he will just not have another one!. Other than that, he had a good time playing at Maw-maw's today and napped pretty long this afternoon.
April 25, 2001Was that a seizure?Matthew had an unusual episode today. I video taped it in case it would end up being some sort of seizure. Again, it was in the morning just before breakfast. We were just playing on the indoor slide. He was eagerly climbing and sliding. I stopped him to change his clothes and diaper and get his bottle. He was crying out to me as I prepared his bottle. I thought he was just being cranky, impatiently awaiting his bottle. I looked over at him from the microwave and he was reaching his right arm out to me and crying. I said, "get up lazy!" I thought he was just being stubborn. As I walked toward him, he continued to follow me with his eyes but he did not roll to get the bottle as he normally would have."You can't move can you?" I didn't know what to do. Do I video tape? Do I see how much sensation he has? I got the camcorder. Thinking that if it never happens again, I would be able to ask the neurologist about it. For this "seizure" he seems paralyzed in his upper left torso and arm. I tried sitting him but he only slouched back over. He was alert and wanted my help is all I could tell. This lasted about a minute and he was sleepy and groggy afterwards but took his bottle and ate. I can hope it was nothing, but will definitely evaluate further if happens again.
April 26, 2001EchocardiogramToday was our echocardiogram, which revealed two suspected tumors in the ventricles. This was to be the final piece of the puzzle I think. If he has the tumors in his heart we would have our answer. Yes, it is Tuberous Sclerosis. DonŐt know why I should be so excited about this. It is just so hard to be in limbo about what we are dealing with. Even though I am sure in my heart! It seems they do not cause any problems and shouldnŐt ever be a problem. If they do exist, we will just have to monitor them. The cardiologist called that same afternoon to inform us that there were two suspected tumors in the ventricles of the heart. We would need an MRI for conformation.
 April 29, 2001Fourth seizrue and what began my emotional roller coasterAnother seizure today. I pushed the episode on the 25th to the back of my mind. I was still thinking or hoping that it was not a seizure. Both episodes involved paralysis of the upper left trunk and arm. This morning he was lying in our bed at nearly the same time as those other three seizures. We sat him up to play with Aaron. He was playing as usual. I left him there with Daddy and brother. Came back and he had fallen over face first with his legs still tucked under him. He was crying and I encouraged him to get up. Again, I thought he was just being lazy. I then realized he couldn't move. I rolled him over to his back and noticed that his left arm just flopped to the bed. That was when I realized this was the same thing I saw him do on Wednesday. We raised his arm repeatedly and it would just flop back down. He was still crying from agitation of not being able to move. I picked up his left foot and tickled it lightly to see if he could pull it back and he did. He even wiggled his toes. I am not sure if the sensation was just returning there or never left there. Daddy sat him up and he was able to stay there a few seconds. Once again he was very listless and sleepy looking afterwards and that prompted me to want to see the doctor at the childrenŐs urgent care center. Was this some sort of seizure? He was alert, completely alert! He was just unable to move. The doctor seemed to believe it was a seizure as unusual as it appears. He explained that children with Tuberous Sclerosis are known to have atypical seizures, and he somehow soothed my fears of giving him phenobarbital. Maybe I just realized that it was definitely needed now. So, I will start the phenobarbital in the morning. I decided to wait till I could monitor him really closely throughout the day.(My thoughts later that day) It is so incredibly hard to think that such a little guy who is only learning of the world around him and learning to explore it can be going through such a difficult time. I cry every time those images come to mind of him in a seizure. I cry thinking that I am gonna have to give him this medicine everyday twice a day. I cry that he has tumors in his beautiful little heart that is so full of love. I cry because I am thankful he doesn't know how hard it is for Mommy to see his beautiful smile and yet feel so much pain for what he is going through. I cry because Tuberous Sclerosis will always be a part of his life. It will always be a part of all our lives. I cry because how could I not want another beautiful smile to light up my life and yet, be so scared that another smile only would cover up what others don't see-- TSC. I cry because I know that we will be okay!! I know that God made him special, beautiful smile, loving personality, friendly yet shy, inquisitive. He is so perfect and I would not trade one single precious moment. We will beat this disorder, and I will get past all the pain and realize that it is out of my hands that this happened to all of us. I will remember that Aaron needs me too and Daddy! I will give them hugs every day many times a day so they will know how precious their lives are and how they have enriched mine so much!!! I will be strong and hold my head high and remember that Aaron and Matthew are still boys and both want to learn so much about what goes on around them. Neither is helpless. Neither is hurting. I will just look at their beautiful faces and say. "How did I get so lucky?"
April 30, 2001
Started him on phenobarbital to control the seizures.
May 17, 2001I don't know how else to title this...I was unbelievably emotional through thisIt has been a while since I recorded things to this journal. I sort have made notes and will transfer them when I am not so busy I guess. We have been very busy. We had the echocardiogram which revealed two "suspicious" tumors in the heart. We also had an MRI which was supposed to confirm that. We spent three hours in the hospital that day only to have the films unreadable. There have been so many discouraging things. He has to be sedated for these tests. It is so hard to watch his helpless body go through this. He is so irritable afterwards. He has to be fasted before each sedation and so far we have had to sedate him for the CT of the brain, MRI of the brain, EEG and MRI of heart and now the second echo done this week to confirm those two tumors. I got to see them. I was amazed how large they were. I was expecting something the size of my pinky nail or smaller I guess. They are more tike the size of my thumb from the knuckle up.
I am sitting here watching him watch TV right now. I never thought I would be so happy to see a child interested in TV, but to see him interested in anything is such a wonderful feeling. His favorite shows happen to be Aaron's favorite shows. Poor Matthew, I suppose much of what he does, watches or plays with will be determined by Aaron (haha). They love to watch the Nick Jr. line-up together. Matthew's favorite being Blue's Clues. I think I have even caught him trying to sing the songs.
I am trying to get a web site started for Matthew. I want to share his story with other families and have a place for our families to go to for updates. I am trying to do it myself, but have a hard time finding the time and energy to dedicate to learning HTML format...auggghhh!. Anyone out there want to help get one started for me? (just some thoughts as I reflect on the last year)We moved back to Louisiana a year ago this month after living in VA for three years. Hmm? A year ago this month I was bringing my Mom's second grandchild to meet her for the first time. I regretted leaving our home we just bought six months prior. I was leaving my work behind. I was leaving behind the place where my kids were born. It was a tough door to close, but with every door that closes another must open. Sometimes I think those doors open and we just don't realize it. It has taken me a long time to realize I walked through a door just by moving back here. I have all the time in the world to dedicate to the boys. To make sure that neither is forgotten in the other's shadow. I have been fortunate to find an odd job here and there to help a little with our expenses, including delivering the newspaper for a few months. As a Mom you feel like you should know your child better than anyone else. You know their voice, their cries and their personality. You would think you would know if they were having a seizure or not. It is a very difficult thing to watch and remain calm while it is happening. Matthew had his first seizure just before I returned to work after his early arrival. (he was 4 weeks pre-term) I am not sure of the date but he was just about 2 months old. I told the pediatrician's office I thought he had what looked like a seizure. Since little nerve twitches are pretty common in such a young developing nervous system, I accepted that as a response. No one seemed to share my concerns so I did not concentrate on it. At 6 months, he wasn't crawling, he couldn't sit, not even with support (not more than a few seconds without tipping). He would rarely roll over. I am not certain he ever rolled at this age, and he could not get into the prone position. The one thing he could do was support a fair amount of weight on his legs with my support, so I never really was concerned. I thought that maybe it was his personality to just be so laid back. Late in the summer of 2000 he started to develop ear infections and I was growing a little concerned about his motor skill delays. The ear infections became more frequent and he was cranky all the time. We seemed to be in the doctors' offices every other week for those ears. I had enrolled Matthew in daycare once a week for some free time for myself and a little socialization for him. Aaron was attending twice a week. The director there was the first one to express concerns over Matthew's motor skills. Finally, someone who shared my concerns about his motor skill development. She referred us to the early intervention program with the school board. They began their evaluations in late August (this was about the time of the first ear infection too). He was admitted to the program with the school board and then had to go to the school board for a more involved evaluation. This was scheduled in early October. We just passed the eight months old marker and he was performing at the level of a 3-4 month old on his motor skills. I wondered how could I let this go for so long? They mentioned his multiple ear infections could be a very important factor to this. They performed a hearing screening and he was determined to be at risk for hearing problems. A couple of weeks after that, he had PE tubes put in and let me sit him up and he actually stayed sitting for the first time ever. A follow up hearing screening at one year of age proved to be normal. It was about this time, I thought all our sleepless nights were behind us. All those nights he woke up seemingly in pain, it just had to be the ears. I was very concerned when the night time wailing did not end. He seemed to be in so miserable. I could not figure out what was wrong or how to comfort him. I took him in to see the doctor late one night. I just couldn't understand what was causing his so much discomfort. They felt is was teething and gave us a prescription to help soothe the gums, but that never seemed to have any affect on him. I gave in and just convince myself that it was possible he was having problems with colic (even though I doubted that so much. Colic at 10 months? I was also still breastfeeding him) Eventually he seemed to "outgrow" what ever was upsetting him so much at night and began sleeping through the night. Much to my grand relief!! I still had not had more than three hours sleep since he was born! It was also about this time we started going to physical therapy once a week. The child net program made all the arrangements for us. At this time, Matthew could barely roll over and showed little interest in his environment. Here we are today, he can walk holding on with one hand. It has to be his left hand, otherwise, he doesnŐt place his left foot correctly and we don't want him to learn that according to the PT. He is very friendly and really outgoing most of the time. I think we are pretty fortunate actually. Life gave us a very special little boy. I will not let him grow up in a world that doesn't know what he has to live with for the rest of his life. I will tell anyone who will listen to my voice or read my letters about Tuberous Sclerosis. My goal is to make it easier for the next family who will be given the diagnosis of TSC. I don't want them to feel "alone" in their battle. Hopefully, more people will have a little general knowledge on this rare genetic disorder.
July 26, 2001First stepsThe tears that fill my eyes are for very different reasons than those that were there just a few months ago. Today, I am proud to see my 18-month old just learning to walk. I walked into a room to find him walking completely on his own for the first time. I have no idea how far he walked, but to see him TRY just fills my heart with so much excitement. I am happy to see those eyes every day that bring so much happiness to our home. I am happy to have Aaron, his older brother who helps encourage Matthew. I am happy to have those smiles any time I need them to brighten my life! Even though I know all to well those little grins are the same "little devilish grins" that fill my day with frustration. The frustration of removing Matthew from the kitchen table for the hundreth time. Frustration from Aaron's refusal to become fully potty trained. But, where would I be without them? Without those faces? Without those hugs?A neighbor once said to me that she can only imagine how tough it must be to have a child with such a disorder. She couldn't imagine the struggles we would be facing. When I read her website about her beautiful four year old girl who had drowned, I thought to myself "how tough it must be to go on each day knowing that this precious smile is missing from your life!" She is actually the one I credit for opening my eyes to the gift I have been given. Anyone who knows Matthew's story will ask me how he is doing. I can only reply Matthew is doing just fine. He hasn't the slightest idea there is anything wrong with him. You certainly would not know it watching him climb all over everything in his path. He doesn't really talk much yet, but has said a few words. He had used Thank You quite a few times, but I haven't heard it repeated in awhile. I have heard him say Oreo (our cat, not a cookie), ball, bath, bye bye, Momma, mine. Really no reason for concern as far as language goes says the teachers with the early intervention program. He still prefers crawling on hands and knees and sometimes hands and feet with the butt in the air. He has an awful temper I think. When he doesnŐt get things his way he throws himself to the floor and wails. He loves to go outside. He loves to go to Maw-Maw's (grandma's). Uh-oh, getting on that table again!
Matthew walked today! Stood up in the middle of the floor and walked about 3 steps. He was so proud of himself, he just kept standing and sitting, standing and sitting. We were all proud of him!
August 12, 2001Officially WalkingRon's sister came to visit us this weekend from Arizona. She is Matthew's Nanny (godmother). She just loves to see how the boys are progressing. She spoils them rotten of course!There have been a few more epiosodes of seizures in the past weeks. They seem to be related to times when he is not sleeping very well either due to teething or just not keeping him on his regular sleep schedule. He had a couple today. They are so mild that I can barely tell he is having them until he tries to move. That is when I finally see the little quivers in his arm and body. I am so excited to see him walking, I tend to push these episodes out of mind lately. I have video taped every one I saw. It is a good thing I did since I don't get around to recording them till later. There was a period where he had one every day for a few days than 3 in one day and none since, until now of course. Last week was a hectic week. On Tuesday (7th) we went to physical therapy as we do every week. That afternoon was our regular visit to the neurologist. On Wednesday the 10th, we saw the Ear, Nose and Throat specialist to check those tubes to see how they are doing. I also learned how much he loves to swim, so we got him some ear plugs. On Thursday the9th, the teacher from the school board came to evaluate him and chart his progress. They come once a month. I think everyone that works with him is as excited as I am to see him walk. He is so proud of himself now! You can see it in his eyes. Look out world, here comes Matthew!
We are officially walking! It looks as if Matthew will be discharged from physical therapy in a couple of weeks. He is doing great walking. Turning corners is getting pretty easy for him. I find myself just watching him. He is so intent on getting this accomplished it seems. |
