April 22, 2009

The Results

So.. we finally figured out what is going on with Jabin. He had his appointment with the neurologist today in Grand Island. The doctor discussed the results of the blood work and the MRI. It turns out that there IS something wrong in his brain. The doctor said that the myolin (fatty shield-type thing) that is supposed to cover his nerves in his brain isn't as thick as it should be. He explained it this way: Imagine a cable, like a television cable. You know how it has the rubber-ish coating on the outside? That coating is like the myolin covering the nerves in his brain. Imagine stripping that off. The cable will still work, but it won't work the way it is supposed to. That is the way his nerves are. Since he doesn't have that coating on his nerves, it is basically short-circuiting in the sense that not all the information that is supposed to go to the rest of his body is getting there. This is what is causing his problems with his muscles and also causing problems with him growing. The doctor said that this probably happened in the womb. Something happened that cause this. There isn't a whole lot we can do about it. He wants Jabin to have therapy at least twice a week. He said that Jabin may or may not ever be "normal". He said the best indicator of whether or not he will be normal is how he has been developing so far. So far he has been developing in steps. In other words, he will develop rapidly for a short while and then plateau out again for awhile. My cousin Amanda (who is a nurse) told me to give him a lot of fatty and high calorie foods. My Aunt Marvene and James reiterated that for me. It makes sense. The last time he developed by leaps and bounds was when the pediatrician had told us to give him PediaSure twice a day. He needs a whole lot of calories to develop. I am guessing probably twice as many as other children his age. I am going to talk to Jon Paul and see what he thinks. I am really hoping and praying that by giving him a lot more calories and fat, he will not only grow like he is supposed to, but he will also start developing the way he is supposed to. I have no doubt that he is very smart, but his body is not doing what it is supposed to. The good thing is that this does not appear to be a genetic thing. (Praise God!)
I would really appreciate it if you would pray for Jon Paul and I in the next couple weeks as we adjust to this news and try to do as much as we can. I am really praying that if and when we put him on this high calorie diet it will work. I am still trying to work through this information. I knew something was wrong, and I wanted to know what it was. I am glad I know. It is just hard imagining my son never "normal". I am asking God for guidance and peace. I want to make sure that I am doing as much as I can for Jabin. Whatever that means. I would appreciate it if you would pray the same thing for me. Thank you to all of you who have already been praying. I appreciate it very much. It means a lot to me.