Tuesday, July 3, 2012

Feeding Team update and other tidbits

The last two days have just gotten away from me, we've been busy! I apologize for such a long post!!

Monday morning was Jax's full Feeding Team appointment and I was so pleased to see that he gained an entire POUND, yes he's up to 25 lbs! He had two illnesses in the last six weeks where we pulled his food volume back, and he still championed through. He still needs his full can of Pediasure through the tube at night, but he is definitely moving along better with weight gain. He will need to figure out how to get those 360 calories through his mouth throughout the day in order to pull back on the tube at night. The docs all said it will come with time. I'm in the middle of figuring out a formula through the medical supply company and the dietician to figure out something different. Jax can't drink the Pediasure that he gets through his tube because of vomiting it up so much. I make his formula with whole milk and a whole lot of Instant Carnation Breakfast. I am flying through it like crazy, and he seems to be getting sick of it. We're trying to match up a flavored pediatric drink that is 1.5 cal (360 calories per 8oz) to drink.

The feeding therapist did a session with Jax to see if he was ready for chewing. She presented him fine cookie crumbs on a spoon (and I CRINGED) and sure enough, he panicked, gagged and vomited all over himself. We cleaned him up (sort of) and he sat like a good boy and took the next spoon of crumbs. And when I say spoon of crumbs, I mean a few crumbs on the end of a tiny spoon.
Jax stuck his tongue out with the crumbs on it and pointed to it with a small amount of anxiety... as to tell us "LOOK AT WHAT IS ON MY TONGUE"!

When he realized we weren't going to save him like I do if solid food ends up in his mouth, he gagged through it and kept them down. He did it two more times and we all cheered. The doc said he is ready to start chewing-therapy with our weekly therapist (Mr Nick). He'll start using chew-toys as I like to call them, that are dipped in crumbs and put into the back of his teeth which should prompt him to chew and swallow. We'll see how all this goes over. I really think Jax's calorie/food intake would be so much better if he could eat/chew more solid food.

The GI specialist said Jax looks great. He's of course skinny, but he's playing catch up with gaining 9 grams per day when the age appropriate daily gain is 5 grams. The doc and nurse counseled over what to do about the tissue sticking out of Jax's stoma site. They did a round of silver nitrate and sent some home with me and some directions of what to do over the next two weeks. I hope it works! It's quite the mess of blood with these treatments.

The specialist doesn't need to see Jax for... six months. Say what now?? Right? He said that Jax should be presenting as a new little man then. He told the boys Happy Birthday and bent down by Jax and said, "I'm rather sure this is your last birthday with that tube".

So the feeding psychologist and dietitian will see Jax in about 7 weeks to stay on track, but I did the math for the GI doc (who will be making the final decision and doing the final surgery to end all of this). Jax would have the next four months to gain and intake the necessary calories by mouth and then 2 full months of final non-tube trial. I actually like this goal and it feels attainable and not pushing Jax. That would be an amazing end to the year.

After the appointment, we rushed over to speech therapy with Miss Trish. Thank goodness I had a change of clothes for Jax in the truck or we wouldn't have made it on time. The boys made fire cracker hats and soaked up all of Miss Trish's positive energy. She is always smiling and has taken to the boys very quickly.

In other news, I received a phone call from the pediatrician's office relaying a message to me that our doctor was researching the paper I left for her about the fish oil and vitamin E helping to stimulate the neurological defect area for apraxia and gut/allergy issues. The receptionist said that the doctor wanted all possible information to have the most informed conversation possible and she'll be calling next week. I love our doctor, she's always been involved with every detail and has never let us down. I look forward to her input and advice on the matter.

We actually got a little bit of rain this morning. Today was hot, humid and just gross all around. I took the boys to see a matinee around 10am, and they of course loved it. We saw Madagascar 3 (not that they've seen either of the first two) and they think the penguins are the coolest things ever. I wanted to see Brave, but there wasn't a morning showing and I've been waiting to hear from others if my almost 4 year olds would like it.
Lindsey came for 2 hours today so I could get some work done, and she took the boys to an indoor bounce house where they came home sweating, smiling and full of stickers - lucky boys today!

I also have been in touch with "Child Life Services" from Children's Hospital about the toy drive that we're doing. We're setting up a time with the Feeding Team for the official donation and a photo with the boys. I think it will be the last Tuesday in July since that seems to be the only day coordinating between the hospital and Jason's crazy schedule. This will give time for anything trickling in too. We're up to 61 toys - how amazing?!
I've also gotten a few questions from those attending the party next weekend. The donated toys do not have to be from the Amazon wish list, that was intended to make it easiest for online donations, but you can of course go that route. The toy needs to be new and unwrapped, and that's it!

Miss Trish and the little men!

Loving the wading pool on a hot day full of appointments yesterday!

Lindsey running through the sprinkler with the boys.


Matt & Shana said...

Loved reading this statement "I'm rather sure this is your last birthday with that tube" !!! I teared up a bit....Oh and my mom told me she sent 2 Leapfrog chat and count phones and she probably didn't write her name on anything, in case you were wondering :) I hope the party is a smaching success and I can't wait to see the pictures!

Matt & Shana said...

*smashing success :)

Jenn said...

So exciting! It is amazing how far they both have come. I am sure when the day comes you wont know what to do with yourself when you don't have to deal with a tube anymore! You all have worked so hard!

Kimberly said...

My heart melted reading what the doctor told Jax about this being his last birthday with a tube. Words cannot express what a little rockstar he is. I want to reach through the screen and give you guys a big fat hug!! xoxo

Sara said...

How wonderful Annie!