moebius syndrome?

frankiesmom

frankiesmom

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frank has been diagnosed with a variant of this..finally.
it explains a lot of the weirdness about his issues, but they also told me that the nerve damage cant be repaired..is this true?
it really explains why he cant eat, and his hearing loss. apparently, being really delayed is kind of rare with this, but it does happen, along with the sensory stuff, plus the sleep issues.
:hmm:
franktshirt22.jpg
 
Yes it is true.

Some kids have had facial surgery to give them a bit of an ability to smile and use expression, but what I have seen doesn't look natural, and I don't think it really affects the ability to eat , etc.

That's something that just has to be adapted to, and remember I have facial paralysis and am speaking from a position of experience.
 
oh thats right!! so you do know about this. yeah, we saw the smile surgery thing and i dont think it would be worth it..i initially thought that it restored the nerves so they COULD smile properly, not fix the face into a permanent smile.
 
that's great that U guys found the answer!!!!! I might have some nerve damage when I was a young baby after I didn't even hear my parents calling my name.
 
its just interesting because they said that the hearing, eyes, and face nerves are all interconnected somehow..i guess i never thought of it before. he is also on trazodone for sleep, which has been wonderful. unfortunately, other than a huge love of music, the hearing aids havent done much in the way of communication, and we have had them almost a year now.
 
frankiesmom said:
its just interesting because they said that the hearing, eyes, and face nerves are all interconnected somehow..i guess i never thought of it before. he is also on trazodone for sleep, which has been wonderful. unfortunately, other than a huge love of music, the hearing aids havent done much in the way of communication, and we have had them almost a year now.
Click to expand...

You can look up a chart of the cranial nerves, by number and see how close together they are.
 
Not much input here about the syndrome...but want to note that you have a very, very beautiful little boy!...Tugs at my heart strings.
 
oh thank you! he is so precious to me. its so strange..its almost like we are stuck in time, with him..he is still the little baby he was LAST year when i found this forum, except he laughs a lot more, and he loves his baby music. hes also getting heavy too..he still wants to be snuggled like a baby and hes 38 inches tall now so its a bit tricky!
 
thank you! here is another picture of him..he really is a good baby. i just hope we can help him develop and learn more so he can eventually learn sign language, or even learn to point at pictures even.

sweetbaby.jpg
 
thank you! hes getting so big..i was looking at his pictures from last year, and i cant believe how much bigger hes gotten. one thing he does now, and this is adorable..he will get his hearing aids off of the desk and bring them to me now! he loves wearing them..and his glasses. we are getting his new pair tomorrow because SOMEONE lost the brand new pair he got last month. in their living room. seriously, i cant find these things anywhere.
 
you're welcome! and plus there's boxes to keep the clutter in!
glass cases are helpful if the glasses aren't used :)
 
that is the sad thing..they WERE in the case. he got his new ones today but we are going to exchange them monday because they are pink instead of red.
 
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