Good news on the hearing front: We met with out ear-nose-throat dude on Monday, and he green-lighted us for outpatient surgery to put in hearing tubes. We should get a date for the operation within the next 10 days. At the same time, the doc -- a gregarious guy with frosted hair and themed ties -- may trim some of her larnyx to help with her laryngomalacia.
There's no guarantee he can get the tubes in. Her ear canals are tiny. But the doc is optimistic. These surgeries are his bread and butter and he's only had one that wasn't a success. So we're cautiously optimistic. It's wonderful to finally be moving on this front and we'll be so delighted for the day when she can hear us tell her how much we love her.
8 comments:
YAY!!! Good news all around these days! I'm so glad!!
Love from Maine --
OOHHH!! i am so happy for you all!! i know how important this is and it is wonderful that your dr. is so confident! i am hoping and praying that this is the week we get mason off of his O2 during the day so we can go forward with more testing. did hope have a CAT scan?
can't wait to 'hear' more!!
That's great news - I hope the surgery goes well, and Hope's hearing gets a boost.
Our ENT told us (when Ben was about Hope's age) that she personally COULDN'T put tubes in his eardrums because of his tiny ear canals, but thankfully he hasn't needed them so far.
Congrats! This is awesome news!!
Hi, Michele, mom to 18 yr old Josh who also incidentally has CdLS. Stumbled upon your blog on a google search and your Hope's baby photo looks amazingly like one of Josh's years ago. We did the ear tubes mucho times when Josh was young and they seemed to bring relief. We still have his ears surgically cleared out about once a year because his ear canals remain narrow to this day.
Wishing you well on your journey, it's a wild ride fraught with dips, drops, turns and moments of just sheer awe-inspiring joy and yeah, you know about the fear part. I well remember the trepidation, fear of meltdowns, etc, and I won't pretend they don't still occur, but hey, you live the life you have, hopefully as fully and as happily you can, day by day. ( In our house, a few adult beverages have also been known to be of huge assistance. :-) So glad that I came across Hope's journey. Michele, Josh's mom
Hi Misty: Mason is in our thoughts as always. And nope, no CAT scan for Hope, thankfully. I think our frosty-haired friend is just going for it.
Joel
beautiful baby!
Yaayy good news! I hope all goes well. And good for Frosty Hair for going for it. Natalia just had ear tubes placed 2 weeks ago... it was a piece of cake (no kidding 5 minutes tops). We could tell a slight difference in her hearing B U T are still waiting fot the ABR test to be done. Best of luck and hugs to lil Hope.
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