Tuesday, July 14, 2009

sleep study update

Ok, seriously. How in the world are we going to have a sleep study when Max refuses to sleep through the night? Once again, Max was up from 1am until at least 4am having his lil' night party.

Seriously, why in the world do our CHARGE kiddos insist on having night parties? Yes, I get that their neurological pathways are different, blah blah blah. But seriously, doesn't everyone enjoy a peaceful, lengthy good night's sleep?

So God, I have a few quick questions (complaints) for you about CHARGE Syndrome:

1) WHY do individuals with CHARGE Syndrome have exceptionally small feet when their balance is already so severely compromised?

2) WHY do they have abnormally shaped ears that have difficulty with hearing aids when most experience severe hearing loss?

3) WHY do they have night parties when their bodies (and their parents' bodies!) desperately need restorative sleep to deal with the lengthy list of challenges throughout the day?

Please get back to me soon so I can report your answers at the conference next week. Thank you. (And oh yes, I must compliment your work on blessing Max and all individuals with CHARGE an incredible determination to survive and thrive. It almost makes up for the above complaints/questions!)

4 comments:

Eva Nichole said...

YES!! I HAVE THOSE QUESTIONS AS WELL!!! Eva has the tiniest feet and they are cute but omg!!
And the ears!! MORE OMG!! By the way Eva's ear did not stay the way it was fixed the stitching popped out and now we have to go back to the ENT and figure out what to do now.

hannah m said...

I didn't realize - thought I kind of assumed - that exceptionally small feet are a common CHARGE feature. Viv's got teeny tiny feet.

Moriah Bettencourt said...

Hi Amy,

Alex has pretty average feet for his size I think, no one has ever commented on them being small.

But I did want to chime in & say that having Alex's tonsils removed changed his sleep 1000%. Before he had such bad apnea that he was never getting good sleep & his sleep schedule was all over the map. Now he sleeps a solid night on most nights and ofter 11-12 hours if we do not wake him up in the morning. For Alex the trickw as getting those large tonsils out & then it was getting him out of our bed. Little snuggle bug was always in our bed but a couple of years ago I made the decision to do the "Supernanny" sleep thing & I'm embarrassed to admit that it worked like a charm. Sometimes he's awake in his bed chattering to himself but he does at least stay in there.

Eva and her 'rents said...

Haha! Such witty writing! I can FEEL your exasperation!