Been a while since we've posted. Probably because, #1 Things have kind of settled down with the issues our little guy is facing, and #2 it feels weird to post about a kid who doesn't have Trisomy 18, on a blog about parents of a trisomy baby. (note to self, change the blog title).
But the newest excitement in our adventures with our little guy comes in the form of what we are calling 'seizures' (still haven't been verified that they are truly seizures). He'll be looking around, minding his own business, when suddenly a misfire in his brain forces him to roll his eyes (not the teenage eye-rolling, mind you) up into his head and drop his head. It only lasts a second, then he pops his head back up, looking confused (as confused as a 6 month old baby can, anyway).
They started about a week ago, with one or two a day. They've increased until yesterday he had 4 in the morning, 10 in the afternoon and another dozen in the evening. We first just thought his neck was fatigued from holding up his big head (all our kids have big heads, poor kids). But then he started doing it when laying on his back as well.
So we took him to the Primary Children's Hospital, and they did an EEG test. No conclusive results were found concerning seizures, but his brain waves were abnormal. So they decided to keep him the night and do an MRI in the morning.
The MRI showed less myelination development (those myelin sheaths that cover the nerves) than he should have for this age. Also there were two nerve clusters in the frontal lobe area (they usually spread out more). They think the clusters might be causing the 'seizures', but don't know. A few more tests were ordered, and we're waiting the results for those and will be taking him back Monday to get one more done.
In the mean time, he's home and they've got him on an anti-seizure medication to see if that stops them.
All in all, he's healthy and happy, we'd just like to know what disorder (if any) he might have, so we can help him more.
I feel bad for those for whom this sort of thing is dropped on. We've known since part-way through the pregnancy that things weren't completely right, and have had time to come to grips with it. We're just so thankful he's healthy. We love him more every day and know that Heavenly Father is watching out for our little guy.
Thanks to everyone for the 'well-wishes' and prayers. We love you all.
That is scarh for a parent: not knowing. I hope you get answers soon.
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