Going into these appointments there were two things we were concerned with. Joel's weird eye movements and his speech. The Neurosurgeon said since the eye movements only last a couple seconds they are nothing to worry about. When we asked about him not talking yet (when they did the brain surgery they probably took out the speech section so they thought the speech would remap to the right side of the brain) he said that it is possible the brain would not be able to remap if the right side of his brain has tubors in the area that the speech would remap to (since most of his brain is tubors, it is very possible). The Neurosurgeon said that it is possible Joel will be able to understand us but not be able to speak. He said if that is the case, he should be able to learn sign language since that is a different area of the brain...so we are going to step up our sign language efforts (we have been trying to teach him for awhile but Joel isn't learning it). In general, the Neurosurgeon said that Joel is doing great. The goal of the surgery was to stop the seizures, which it appears we have done. All glory to God!
After our appointment with the Neurosurgeon, we rushed to the building next door for Joel's appointment with his UCLA Neurologist. About the eye movements she said that we should see the Neuro-ophthalmologist from LA Children's Hospital that had previously been recommended to us by Joel's Ophthalmologist. He will be better able to tell if the eye movements are related to Joel's brain (due to the surgery) or seizures. About the speech, she said that children with Tuberous Sclerosis Complex (TSC) are slower to speak anyways and that the anti-seizure med he's still on (Zonegran) can cause some side-effects in speech. We are considering and praying about changing his medication. We don't want to do anything that will hinder him talking, but at the same time he isn't having seizures right now and messing with his meds could cause seizures. It's a fine balance and a very difficult choice. (One of the many, I guess.) She also thought Joel was doing really well. At the end of the appointment, we asked her if a growth on Jason's (our 4-year-old) face could be related to TSC. She said yes and be sure to mention the TSC to the dermatologist Jason was seeing the next day.
The drive home was pretty difficult. As the kids slept, Isaac and I discussed how we felt about the possibility that one of our other precious children may have this terrible disease that has torn apart our lives. How would this affect him and his future? What were we going to do about the possibility of having more children. If two of our children have TSC then chances are that it's hereditary. That would mean that any of our children would have a 50% chance of getting it. I still really want a daughter. We came to the conclusion that Jason is Jason no matter what. Having it wouldn't change him. He would still be the same. And if he had it we would adopt a girl in the future. No matter what happens, we have God to take care of us.
Well, we went to Jason's dermatologist appointment the next day with a heaviness on our hearts. We told the dermatologist about the TSC that is in our family and our concerns (including the growth on his face, a white spot on his skin that Neurologists have been concerned about because it can be part of TSC, and the little bumps on his nose that can also be a sign of TSC...all these things (except for the growth) had been worrying me since Joel was diagnosed). When the dermatologist told us that the growth on his face was just a wart, I felt a huge weight lift off of me. When she told us that 20% of people have one white spot and the bumps on his nose were caused by his asthma and allergies, I felt the rest of the weight that I had been carrying for the past two years lift off of me. I felt like crying and laughing all at the same time. I just smiled with tears in my eyes and gave my precious little boy a tight squeeze.
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