So I've been researching Nutt's diagnosis. Wow. Of all of the strange things out there that our creator could pick for my kid to have, this is one of them. Apparently this disorder is caused by missing nerves in Nutt's brain. The VI and VII cranial nerves to be exact. From what I gather in reading (and from what the neurologist told us), Nutt is only missing cranial nerve VII that controls the right side of his face. This means his paralysis is permanent. Kind of a bummer. I just wish our doctors would have fucking told us this a month ago so we knew what was going on.
But I've been meeting with Lisa from Early Intervention and she's been like an angel to us. She has pointed me in the direction of a website (www.manyfacesofmoebiussyndrome.com) that has been really useful in learning about Moebius Syndrome. There are stories from people that have been diagnosed or from the parents of kids that are diagnosed. From what I'm gathering, there's different levels of paralysis that can be caused by Moebius. Some people can't move their eyes from side to side and some people have limb deformities along with a host of other problems. Nutt seems to just have skimmed the surface.
Sigh. I guess it's time to finally admit that this won't be getting any better any time soon. From what I've read on other sites, we can have a procedure done to place little weights in Nutt's eyelid to assist him in blinking, even though our opthamologist told us not to bother (what a dick, btw. I guess he sees a lot of visits from us in the future to cover the cost of his new Jag or his wife's new boobs). Of course when someone tells me no, I'm going to insist on another opinion. And there's a pretty crazy surgery that would take nerves out of Nutt's leg (I think) and put them in his face so he could smile. That's something to look into WAAAAAAY down the road. I have a slight (slight, as in gigantic) fear of anyone slicing into my children, unless it would be to someday install mute buttons. We'll wait for him to weigh in before we commit to that.
Everything is finally starting to become a little less foggy with this whole Moebius Syndrome thing. I joined a couple of groups on Facebook and everyone seems genuinely concerned and willing to help. It's definitely helping me breathe a little easier, knowing that there are other people out there like Nutt. I felt so isolated since this is such an uncommon thing to happen. And doctors have no idea why it happens. That's the scary thing to me. I don't know if it was something that I did or if my DNA zigged when Big Daddy's zagged. Hopefully someday someone will figure it out. Maybe it will be Nutt himself!
Oh yeah, update on the Nutt! He's doing fine. As far as we can tell, there haven't been any other complications with the MS, except that after a (very) frustrating month and a half of nursing, I gave up. We would spend 20 minutes trying to get him to latch, he would nurse for 5 minutes, fall asleep and unlatch. This pissed him off so he would wake up and the whole process would repeat. Sadly, the bottle works much, much better.
He also refuses to sleep in his crib. Big shocker. I wouldn't want to sleep in there either. That mattress is hard as a frigging rock but I guess that's what you get when you spend $40 at Wal-Mart to buy one. He's been crashing in his car seat in our room. Can't say that this one is like Evel and sleeps through the night, though. He needs food. A lot of food. All the damn time. Just like daddy.
We're also having some trouble with him keeping his food down. Just like Evel. I did not sign up for this again. He's also been pretty bound up since we switched him to formula so we'll be making a doctor appointment for that. I have a feeling this kid is going to be expensive.
So that's about it. I'm going to go obsess over some more reading on MS so I can scare myself some more about everything that could possibly be wrong with Nutt.
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