Forgive me for taking so long to write this post.I kept starting and then stopping, that is why this post is dated the 25th, but actually published Febuary 4th. The reason for this is, I have been having a hard time dealing with what we told. It is actually almost a week and a half since we got the results Matthew's MRI.
On Friday, January 25th, we had a follow up appointment with Matthew's neuro to go over the MRI. I do have to say we were not prepared for the results.
The neuro did say, that only time will tell how much Matthew will be able to do. He also told us, for Matthew to be able to get special services, he is going to call it Cerbral Palsy, but that is not exactly what it is. He didn't tell us what this disorder is called. Ryan said that they probably don't have a name for it yet. That maybe this a newer diagnosis. I asked the neuro what we should do to help Matthew. He said to get as many therapies in place as we can.
Now here's the real kick in the head. We came to find out, the following Monday, that we were not told all the results of the MRI. I was speaking with Matthew's Pediatrician about our visit with the neuro. She tells us she has not gotten a report from the neuro, but she does have the results of the MRI. The MRI report is pretty much the same as what the neuro told us. That was until, the Ped gets to the part, which say that there are areas of Demylenation.
I was/am shocked because Matthew's neuro did not tell us this little bit of info. I was/am freaked because I have MS and that is one of the leading factors of diagnosis. Matthew is to young to get MS. I started to look up childhood demylenating diseases but stopped because they are so much scarier than MS. I decide to look up the definition of Demylenation and here is what it says.
Demyelination: A degenerative process that erodes away the myelin sheath that normally protects nerve fibers. Demyelination exposes these fibers and appears to cause problems in nerve impulse conduction that may affect many physical systems.
So basically, from what we gather, not only did Matthew's brain stop developing in utero, something else is going on also. I am not sure why the Neuro did not tell this too our face. Maybe he did not want to scare us. Maybe he forgot. I think it is scarier to find this out by mistake. In some ways it feels like the Neuro was hiding this from us. I am sure that I am just being silly.
As of now, Ryan and I are waiting to get the report from Matthew's Neuro, we will read it, and then we will decide on our next course of action. We should be able to get it sometime this week. Right now all we can do is pray and love our little boy!!!!