January 25, 2008

Matthew's MRI Results

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 results of the MRI are that during fetal development Matthew brain failed to develop properly. The neuro showed us, on the MRI, that Matthew has a lot of white matter, where there should be dark, and the root like structures that should grow into the brain are growing out in his.The neuro told us that right now Matty's brain age is that of a 18 month old.

I am having a hard time understanding this. A sustained event, while my son was developing inside me, caused his brain to stop developing. I saw specialists, I had ultrasounds every month, my high blood pressure was treated, I did everything I was told to do, and I passed every test with flying colors. Not once, did the specialists say that anything was wrong. I was told that I was the perfect patient and that I had a beautiful healthy baby inside me. SO, if this was all true, why did his brain stop developing and how did they miss his brain not developing.

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!!!!

We Could Use Some Prayers Today!!!

Hi Everyone,

Today, Ryan, Matthew, and I have an appointment with Matthew's Neuro to go over the results of Matthew's tests. The Neuro suspects that Matthew either has Cerebral Palsy or Muscular Dystrophy. I would like to ask you, to please pray that the Neuro has some awnsers to the cause of Matty's problems and that what he has is the less drastic of the two. It took years for my neuro's to find out what was wrong with me. By the time I was given a diagnosis I had lost alot physically. I really don't want us to have to go through something similar with Matthew. Ryan and I, want an awnser so we can start some sort of treatment.

Thank you all for your love, prayers, and support. BIG HUGS!!!

January 24, 2008

Hmmm, Where have you been young lady???

Sorry blog world for being absent for awhile. I plead the fifth???

Life has been becoming increasingly busy for the past few months. Busy is actually an understatement!!!

In October, our regional center had Matthew evaluated by Easter Seals. The results of the eval was that Matthew needed Early Intervention services, Physical Therapy, and Occupational Therapy. He was already getting theraphy for depressive/aggressive episodes. We found out later that Matty was acting out because he was in pain and didn't have enough words to express it. Matthew also had Neuro appointments and tests run to find out why he is having Hypotonia/tremor through out his body. Jessica also started seeing a neuro and went on meds for seizures. This was/is on top of all the other specialists/therapies that Jessica, Hunter, Matthew, and I see.

So to say that life has been busy is an understatement. So far, we have made it through without much more gray hair. No, those are not tweezers behind my back!!!

I will try to be blog more from now on. I know I have been slacking. BIG HUGS!!!