Wednesday, March 9, 2011

Questions Answered

Holoprosencephaly...Say that three times fast, I'll wait for you to give it a try. I'd never heard that one before, I used to read the dictionary for fun, but this was a new one on me. Tommy was without a diagnosis for nearly a year and a half before he finally had an MRI. The MRI finally showed us the root cause of Tommy's issues.

Holoprosencephaly....What it means is that when he was still a fetus, Tommy's brain didn't do the things it was supposed to do. His brain didn't separate as it formed into two distinct hemispheres and didn't produce much of a corpus callosum.

So his brain is without the piece which aids in the left/right communication of brain activity. Not to mention as I said he doesn't have separate hemispheres.

Before we had this diagnosis we chased down several rabbit trails of other ideas, none of which bore fruit. They only served to pull us away from where we should have been looking. If I sound a little bitter about this I suppose I am. A CAT scan of Tommy's brain showed some abnormalities to the neonatalogists, but they didn't pursue them. His geneticist proposed a syndrome she thought would fit and we loped along the trail chasing those down. The blood results proved that wrong.

I guess my frustration comes from the fact that we didn't get into see a neurologist for 18 months because no one thought Tommy's brain abnormalities were worth referring.

When I get aggravated about it, I try and step back and pray. Just letting God remind me that He has known all along what we need to know and when. It seems very much like God is unfolding the many mysteries of Tommy slowly as we can accept and deal with them. This is at once a comforting and terrifying thought. Comforting for obvious reasons.

Terrifying because I think of the fact that we didn't know about two various aspects of Tommy's situation, either one of which could have been the death of him, until he was 13 months old. That's when we found out Tommy has two separate endocrinological issues, either of which, if untreated could be fatal. Yet we had carried on blissfully unaware and he had been kept perfectly safe.

I truly know as I have said many times before Tommy has a very special purpose here on earth. I don't know what it is exactly, but his survival shows he has something to do.

Every time I look at him I think to myself, he shouldn't even be here. Most babies conceived with this problem are miscarried or stillborn.

"The condition can be mild or severe. According to the National Institute of Neurological Disorders and Stroke (NINDS), "in most cases of holoprosencephaly, the malformations are so severe that babies die before birth.
When the embryo's forebrain does not divide to form bilateral cerebral hemispheres (the left and right halves of the brain), it causes defects in the development of the face and in brain structure and function."

So many things seem to have conspired against Tommy and yet he soldiers on. He just daily accepts his trials and keeps such a happy disposition. It is hard to be unhappy with Tommy around.

I remember one night after Tommy was born, while he was still in the hospital I was praying my rosary, the mysteries of the day were the sorrowful mysteries. While reflecting on Jesus carrying his cross, I realized God was telling me that this was Tommy's cross to bear and just like Jesus had help carrying His cross, so should I help Tommy with his.

When the Hand of God comes down on Tommy and gives him his miracle, I hope he doesn't lose his personality to his new brain...Lord I would rather he stay this way, than be healed and be a surly, grouchy kid.

Happy Lent everyone. I hope you all have a glorious season of repentance....

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