Lobar Holoprosencephaly is the official diagnosis from Carsyn’s MRI. I am thankful to have a diagnosis, some people never get one. This is basically where his brain did not separate in the front part of his brain. This happened in the first trimester. He said it had nothing to do with the accident and I did nothing wrong. I held it together through the whole appointment, thanks to all your prayers, until he started saying that Carsyn was lucky to have such a great mom. Also that Carsyn had more personality compared to most patients he sees. He said that is really all that matters. He said that you can not change what is done and to be thankful for what you have. I know this but it really rang true when he said that.
In the matter of Holoprosencephaly {Also known as HPE} there are three degrees, the Lobar is the least severe out of them all. Most kids with the higher two have major facial abnormalities and some, sadly, don’t make it into this World. Makes me even more thankful to have Carsyn here with us. This is all stuff that I have looked up on Google.
The neurologist said, Carsyn may not have a sense of smell. We won’t know this until he is a little older. He also may have seizures, so we go next Tuesday for an EEG. We have to wake him up at 5am and keep him awake till his appointment at 8:30. Not too bad, but the hour ride? Is going to be DIFFICULT! Thankfully Kenny can drive while I try and keep Carsyn awake.
The neurologist couldn’t really tell me his prognosis for his life. He just said keep doing what we are doing. He will know more after a year or so. I also didn’t ask whether this ruled out Cerebral Palsy or not. I don’t think he does/will diagnose Cerebral Palsy this young. I am also not sure how high muscle tone and lobar holoprosencephaly are connected. I have all these new questions but glad I am getting some answers. I do think right now everything else is fine and his main concern is whether or not Carsyn is having seizures. I did tell him about Carsyn’s breathing episode on Christmas Eve. That concerned him. He said if that happened again to video tape it. We should know those answers by the end of next week.
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