Monday, November 26, 2012

Kyleigh update, 2 months

Little Miss Kyleigh is doing quite well. She's growing very fast!  She was 10 pounds 11 oz at her 2 month appointment!  She's outpaced her brother from the get-go!  She's very chatty when she wants to be... and she still loves her pacifier.  She's been sharing her brothers colds that he brings home from therapy and preschool, but she's been able to get over them pretty easily so far. 

Wednesday, November 21, 2012

Saturday, November 10, 2012

Long day, decent day

PHEW. Home from a long day to and from Cincinnati. Both children traveled amazingly well. She slept almost the entire time (when i'm on at 3 am you can remind me how "great" that was...) and he traveled pretty well, but got a 5:30pm nap (and he'll probably be up at 5!) 

The gist of the story is this... He was trialed on a speech valve that has no holes and did amazingly well, hooray! This is a
big gain from 3 months ago. The surgeon scoped him through his nose, which is utter torture. From what little he could see, his airway seems to be pretty steady. He can do some surgery in the airway, probably enough to beat it into submission, but nowhere near enough to get the trach out. We have some options to see if we can push the envelope again, so we'll see what the oral/maxillofacial surgeon says. They tried to do a hearing screen, but he was so exhausted from the scope he was nodding off. The audiologist recommended we stay with the ABR, the one under anesthesia for the time being. Right now we have no plans for another surgery, maybe 6 months or so if things haven't changed in 3 months.
Win some, lose some.
Morning update:  Little girl was up from 5-6, but fell asleep again... He got up at 5:30, not too bad!  We're still a little sleepy eyed.  We put his speech valve on him this morning for the first time since the trial and he's doing really well with it.  He's worn it for about a half hour so far.  He's been coughing a fair bit, but that's not uncommon.  The air coming through his mouth reminds him to swallow the saliva in the back of his mouth.

Monday, November 5, 2012


Here's a smile from the pretty girl.

We return to Cincinnati this week.. We haven't been there in what feels like a long time (3 months maybe?)!  The plan is to follow up with ENT, get a hearing screen and attempt to get him a less modified speech valve.  We may start to put a date on the next surgery, but not sure.  We are going to do all this in a day... with a baby... We'll see how crazy this goes... At some point she'll probably stay with the grandparents for these days, but if we wen't down there without her there might be some complaining...

Unfortunately that erases Trav's day off (today), and he was a meeting tonight til 9:30-10:00... 

Saturday, November 3, 2012