Fast and Furious

Three appointments on Monday, four on Tuesday and the jaw distraction on Wednesday. We will be making up those appointments we missed a couple weeks ago, plus some new ones. His eye is a little goopy and he has been coughing today so who knows if that might lead to putting off the surgery. One of the appointments is with the eye doctor, one is with an ENT and another is with a pediatrician, so I hope we'll be covered. We're on the path to breathin' easy!

Ben made an awesome update to the steak and potatoes classic. Aside from the everyday deliciousness of a thick cut rib eye, he served it over wilted spinach with a spoonful of caper, mushroom, dijon mustard and red wine sauce. He made the potatoes Au-Gratin style with soft creamy goat cheese. I could have just slurped that up with a straw.

Results are in

He does have severe obstructed sleep apnea and will get a jaw distraction in a few weeks. If you want to learn what it's like to have a jaw distraction, there is a great Blog about a plucky little girl that had the same procedure here. If you go read it scroll all the way down and start reading from the bottom up, in chronological order. This little girl has had a few more problems with Treacher Collins than Garrett. We don't expect him to have quite as many setbacks with the procedure, i.e. trech/breathing problems and his jaw doesn't need to grow quite as much so hopefully the turning phase won't last as long, the recovery will be shorter and the jaw might not grow 'down' causing the mouth to temporarily gape open. We will be talking to our surgeon early next week about all the details. Until then, he continues to do amazingly well. A happy, scrappy little thing that smiles the biggest when I'm pretending to lecture him about not exercising his neck muscles often enough.

Hello Hello can you hear me?

We still don't have the results of the sleep study and I had to cancel his appointments for last Wednesday and Thursday because the family was getting taken down, one by one, with a nasty stomach virus.

But some good news! The very clinic/ENT/Audiologist that is evaluating Garrett for the BAHA soft band, had an 'extra'. So we drove up to Dallas yesterday and picked it up. HE CAN HEAR! It's just a loner though so it fits seriously super superfluously goofy (say it out loud now) until we can get him a 'custom job' hat, like maybe a miniature ‘go to hell’ hat

He’d really look like a little old man then. But for right now we're just happy to have anything. Besides, the wonky red head band goes perfectly well with his goofy grin.

I'm sure glad someone on my BAHA Yahoo group suggested I ask the clinic about a loaner. Now my boy can hear for at least as long as they'll let us borrow it, until we work out all the mess of actually buying one. from. them.

And more potentially good news! ECI, God bless them!, seemed to be familiar with the IDEA Act. Now we just have to wait a few more weeks for their audiologist to evaluate Garrett and determine if the laws were in fact written to help him. Cus you know, maybe the Board of Education had someone else in mind. Do I sound bitter today even with all this good news? Sorry, I could probably use a bubble bath ... or even just a 3 minute shower.

No sleep for the sleepy

Looks comfy huh? Every inch of his face was covered in 'electrodes' and he had a total of four things up his nose. "Sos now you want he should sleep? OK Boss." I think he got about 3 hours but apparently that was enough to get the information they needed. We won't know any results until our appointments on Wednesday and Thursday. He will also be getting a CT scan so we can know exactly how things are formed in that little head of his, an eye doctor will be ruling out any eye problems and another ENT that specializes in air ways will be checking out the size of his... well, air ways.

I found some laws that The Board of Education wrote to protect children with disabilities called the IDEA Act. One of these laws allowes Early Childhood Intervention (ECI) to budget for helping families with "assistive technology devices" like a BAHA. This just might help us, so keep your fingers crossed. They came out to determine his needs and did a little evaluation on him. Of course because of his deafness he qualified but surprisingly they found he tested on a cognitive and social level as a 4 month old, in spite of not hearing. Ben and I said early on that this kid was going to be our little genius. No pressure or anything.

fights, faces and food

Garrett will be underweight for a while, at least for several more months, but he is gaining an appropriate amount now. My bet is, even once we get him out of 'Tha DANE-ger Zone' he will still always be thin like Gus. But better grossly malnourished than chubby! Am I right Hollywood??

As far as his hearing, he is profoundly deaf but with a hearing aid he will have absolutely no handicaps, hear normal, learn normal, talk normal, etc... Now actually getting the hearing aid is going to be a fearsome, ferocious fight. There is SO much information, that I'm sure most of you won't want to muddle through, that I'm thinking it would be better to create a whole other blog for the nitty gritties. If you want to know all those sordid details, here is the link The BAHA Battles

The only thing I'm a little worried about is his breathing. His small jaw keeps his tongue crowded into the back of his throat and, in general, his air ways are just a little too small. We are going to his Pulmonologist this Thursday for a sleep study where they watch him over night to determine what, if anything, needs to be done. He may need jaw surgery, a jaw distraction or maybe a tracheostomy. Or all three. Yay.

Ben bought a HEB mesquite honey ham because we've noticed that almost everything HEB produces is exceptionally good even though it's considered 'off brand'. He fixed it the traditional way, with pineapples of course, and holy hotdog was it good! Juicy, tender, lots of flavor. He also tried a new sweet potato dish with carrots.... meh... I prefer mine with marshmallows like any respectable red blooded American should.