Monday, October 31, 2011

There's so much to update!

Bear with me, there's a lot to update!

First of all, let's talk HALLOWEEN!
We took the boys to the zoo on Saturday to meet up with the Bonin Bunch and Jay's cousin John and Amy with baby Olivia. The day was beautiful and the kids were all ADORABLE in their costumes. It was just such a "nice" day out and the boys got a glimpse at what trick-or-treating would be like.

We took the boys to a party at the neighbor's house for some pizza right before trick-or-treating tonight. We all headed out with the kids and ours and the night was fabulous. The boys had the most fun than I think they've ever had in their little lives so far. They didn't skip a beat and ran their little legs up to each door step with the other kids and said some jumbled phrase and then a very loud DANK YOU! We went through the whole neighborhood right until bedtime. It was SO much fun. There is a lot of candy for Jason and I to eat!!

Today was Jaxon's big feeding clinic and GI specialist review at Children's Hospital. I haven't put too much thought into this one because I didn't want to get my hopes up.

The first half of the appt was with the psychologist, speech therapist, dietitian and GI nurse going through a feeding therapy with Jax (only the psychologist was doing the actual therapy). Jax did what he usually does and seemed to take to the bites and drinks like a PRO (because we weren't at home and it wasn't ME). Then he threw his EXTREME fit and went wild reaching for me. I had to leave the room and watch thru the glass until the psychologist got him to calm down and take "one more drink" for mom to come back in and to be all done. Jax was weeping in my arms and then was smiling and playing within a few minutes.

So afterward, we had a discussion that Jax's behavior needs the inpatient feeding program and the longer we wait, the worse it will be. Jax will never be weened off the tube by the work we do in the house. His height-to-weight ratio went from 85% to 89% and they were happy to hear he didn't need a hospitalization for his last illness. Their recommendation was to put him on the waiting list for the program! The wait list would get him in around early spring, and they think his growth would be closer to 90% by then. I was SO happy and excited. Then the ladies told me it all had to be signed off by the GI specialist to clear him medically stable for the program.

So we waited for the GI specialist and I admit, I had a big smile :)
The doctor did his exam with Jax and said he looked and sounded great. Then he pulled his chair up close to me and looked me right in the eye. I suddenly stopped smiling and said, "what?"
He explained that Jax's current volume intolerance would not allow him to be tube-weened by the program in spring. I couldn't control it... tears came out of my eyes totally out of my control. :(

The doctor said, "I'm not saying he CAN'T. I'm saying he can't if he's the same come spring." Ok, I was willing to listen again. Jax currently takes 2.5 - 3 hrs to finish a can of Pedialyte (8 oz). The doctor said that if he can't eat a meal in 30-40 mins, his body needs tube-feeding. His system is just not ready.
So I was given a mission with some tools.
I will change our schedule (OH my beautiful schedule...) to feeding Jax 4 smaller meals a day and PUSH the pump-rate higher. Instead of pushing it 2ml's every few days, I have to increase him 5-10ml's more an hour every few days. I have to expect that once in awhile I'm going to make him vomit and I need to forge through. The doctor said that Jax's stomach doesn't know to be any bigger than it is, and it's TINY right now - I need to stretch it. If Jax proves to not be able to go past a certain point, then it is what it is, and I'll know he's not meant to be weened off the tube at this point. The doctor gave me a big "come to Jesus" talk telling me that it is NOT in my power to make Jax's body work. All I can do is give him the opportunity to show that he can do it, and if he can't then we support him until he can.

The doctor wants Jax in the program in spring regardless - but the goal will be to either to start weening him if his volume intolerance is better or it will be to work on his behavior and give him better skills at eating where he may be able to do less tube feeds and more oral feeds until he's ready for the program again in the future.

My gut tells me that Jax will most likely go through the program for behavior purposes and get a better handle on eating SOME food by mouth, but I always will have hope and faith that MAYBE he'll prove everyone wrong :)
My only worry is that he has all winter, and is in school... I don't know how much we can push the pump-rate if he has colds or virus' off and on. We'll deal with that when it happens, I guess. I admit I will be more bummed with every cold now though.

Jax will be doing a swallowing study to make sure his throat works mechanically. They plan to have the psychologist administer the food since Mom (me) doesn't work best with him. It's a common thing with feeding disorders in children. They resist their family and their home environment. That's one of the reasons they do this boot-camp sort of program at the hospital to change the behavior and THEN implement it in the home.
Jax's paperwork has a diagnosis on it that I've never seen before. It says: Dysphagia, Feeding disorder and G-tube dependence. I looked up dysphagia and it seems to be that a person has a hard time swallowing solid food. Um, yeah, Jax has never had anything thicker than applesauce in his mouth (never a full bite) and that makes him gag. So I actually agree with that one!

Sorry this was so long!
 (24.5lbs, 34.7")
Dinos at the zoo!

I caught a dino!

Brady is kicking back in the wagon with a sucker in EACH hand! (Baby cousin Olivia is up and walking around like a champ!)

Our failed attempt at a group photo of the kids. Look at cute Drew as the boy's baby dino!

Boys ready for Sunday football.

After a few minutes the boys ended up playing in the basement.

Jax at in the GI specialist's office. He's licking the OUTSIDE wrapper of a sucker. He likes to pretend socially that he eats. He licked this thing for a good 20 mins. I opened it and he threw it away.

On their way to the neighbors for their FIRST trick-or-treat ever!

The group!

Getting football cards from a town police officer.

Some of the houses had games for the kids to play! Here Jason is helping Jax do a toss game and Brady is helping himself to the candy he won. So fun!

I love these moments.

1 comment:

Richard said...

Thanks for your update for the Halloween, I know that It was to late.. hehehe I was dropping by, hopping that you have a great Halloween yesterday..

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