Yes, Drew will be able to use his voice some day.
His vocal chords are fully intact and functional if he gets air across them. Once a month we take him to the hospital and the plastic tube in his trachea is replaced with a new one, if we are lucky we get to hear a squawk or wail during the 3 to 5 second interval where the tube is out.
We should be able to hear him eventually even with the trach tube in. Right now, since he is so small the plastic trach tube takes up most of the space in his trachea so very little air can flow up and around it. As he grows bigger his trachea will get larger and some air will be able to leak up and around the trach tube and past his vocal chords when he exhales. There are also different one-way valves that can be attached to the trach tube to facilitate this (so he inhales through his trach tube and exhales through his mouth). As crazy as it may seem, we really look forward to the day when we can hear our baby cry!
No, there is no further insight into his diagnosis.
Basically the Drs are stumped by our little mystery boy. He has a "central hypoventilation like" type of "dysautonomia" which means his autonomic nervous system is not functioning properly so he's not so great at brain functions that you normally don't have to think about (like breathing). Although it would be nice to have a diagnosis so we could know what to expect in the future, it's not like having a name for his condition would change his treatment anyways. For now he will continue to be closely followed by a number of specialists, who so far are very encouraged by how quickly he has improved.
David very rarely has migraine headaches anymore but continues to have good and not so good days in terms of his overall health. Luckily he does feel good enough that he should be able to take care of Drew full time starting in September when I go back to work. It would be great if people could pray for this as we're both a little apprehensive about it.
And for Aunty Jo:
Thanks for the signing website, we'll add it to our collection of signing bookmarks. We have been doing quite a bit of signing with Drew so far and it always helps to have more resources to find the obscure signs for things like mail (Drew and daddy go down to the lobby to check the mail every morning) and monkey (we frequently do the "little monkeys jumping on the bed" rhyme) that aren't in our signing books.
kb
3 comments:
i was wondering! thanks for the update. karla, you have to go back to work so soon! we'll be praying that the transition won't be too hard on any of you. also, you can just make up your own baby signs. there probably won't be an emergency situation where drew needs to be able to communicate "monkey" with anyone other than you!
Thank you "my dears" for the up-date!
I'm very happy to hear that Dave's migraines have diminished & will pray that his overall health continues to improve. I feel I can somewhat empathize on his up's & downs as now that I have hit what the modern world so lovingly calls "peri menopause" I never know if I'll wake up feeling like me or a fatigued, foggy, achy, version of myself.... I know, bad comparision but still...
Have to admit to wondering why the sign language? Then the brain cells kicked in...
You're all kept in my prayers ~ love & hugs
Aunty Lela
Hey Karla, thanks for the update - it's good to know. It's tough to have to go back to work, but we are confident that all of you will do very well. Wonder what kind of 'trouble' your boys at home will get into:) How are Drew's smurf spells? Any improvement? He is becoming such a grownup boy with all his hair. Big hug for all. Jo/Bob
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