Tuesday, December 13, 2011

Broken tires, but not broken dreams!

The boys and I had quite an eventful day today. Jason texted me at 5:30am telling me that he saw the tire on the truck flat, so he ran it to the corner gas station to fill with air for me before running to the airport this morning. I had to drop Jax off at school and then get to our neighborhood mechanic to look at the tire. I made it there ok, but the tire was definitely going flat again. Mind you, we just had it repaired a month ago for a nail in it.
Brady and I waited patiently (thank God for the sucker in my purse) and we come to find out the tire is irreparable. So I thought, "no biggy, we'll put on a new tire since we were planning to replace them in spring". Well, it turns out that you can't have one or two new tires and two old tires because of the suspension system... or something like that. Soooo, that was a surprise $1,000 bill we weren't expecting for a few months. Such is life!
I told the mechanics that I had to pick Jax up from school and I had no option than to bring the boys since Jay is in Texas for the day, so they overfilled the tire so I could run out and they were ordering my new tires in. I got the kids their food and some toys and we went back. We waited for TWO and A HALF HOURS because the delivery truck with our tires broke down - oh the irony!
You can imagine how the boys were for the last hour... oh my gosh, I'm exhausted from their non-stop antsy hands and curious legs.

On a good note, I got THE call today while we were sitting there. A feeding clinic coordinator called me and said Jax was next on the list to schedule for the inpatient intensive feeding program.... I was speechless! This is the thing we've been talking about for years, but it always seemed so untouchable. Now he's officially scheduled for Monday, Feb. 6... EEEK! I'm waiting for the official paperwork packet with all the information. All I know so far is that it's 2 straight weeks and I will be staying with him. I don't know anything else yet, and we'll have to figure out all our coordination of life for those 2 weeks.

All this is contingent upon Jax passing his swallow study next month, which I feel confident he will. It's never been thought that Jax has a mechanical issue with his throat (ie, he can chug water), so hopefully that all goes smoothly.
Now of course, I do still understand that if Jax isn't taking his feeds fast enough at that point that the program will be to start correcting his feeding behaviors and teach him how to eat with hopes he'll intake SOME of his meals by mouth (he currently, and always has taken 100% of his nutrition via tube). So I need to keep my expectations (aka - hopes) to that instead of a full force weening effort.

Jax has been kicking butt with his tummy lately and I have his pump rate close to 100 again. Cross your fingers we keep going!

7 comments:

RainSplats said...

I just found your blog accidentally - looking at toobie whoobies.
I have momo twins who were born in the Summer of 2008. One of them is gtube fed. (she has a congenital heart defect).
What is this intensive feeding program and what hospital offers it?

Melissa said...

That is awesome news! Can't wait to hear more updates about the program after he starts.

Angela said...

Annie! This post makes me so happy..well, all but the tire part. Jax WILL pass the swallow study. I'm so excited for this opportunity for you guys! Love you!

Matt & Shana said...

Good news! We will keep our fingers crossed over here for Jax and the swallow study!!!

Annie and Jason said...

@ RainSplats - Children's Hospital of Wisconsin is where Jax is seen for all his GI and feeding needs. There is a clinic there that does outpatient and inpatient treatment for feeding issues. We've been talking about the inpatient program for years, but Jax has never been "medically stable" enough to get in. He's finally getting in, although he may not be ready to be fully weened from the tube - but taking BITES or even some of a meal by mouth would be amazing! He's never eaten a meal or had anything more than a puree in his mouth yet and he is 3.5 yrs old. We're excited!

Doubly Blessed said...

Awesome news! Praying all goes as hoped!

Sara said...

That is awesome! Feb can not come soon enough!