Thursday, February 9, 2012

Day 4

Jaxon continues to improve, but change is in the air.

Jax's weight was the exact same, so he hasn't lost even an ounce yet, or so far, however you look at it. His blood sugar was at a beautiful 75, so they'll probably stop taking it soon since he continues to show that he's stable that way. He's most likely not getting the proper total nutrition a person needs with the foods he is intaking, but this is just the bootcamp to get him accepting more by mouth, and less by tube. So far, so good.

Jax had puree'd eggs that he was not fond of this morning, but he choked them down. I really thought he was going to vomit, but he pulled it together and ate about a 1/2 oz of them for breakfast along with some banana pudding and 4 oz of chocolate milk.

I can't remember what he ate for lunch because another psychologist and the head of the unit (who we used to see back when Jax was a baby)  were reviewing things together and involving me as we observed. The plan is to offer Jax a straw or the cup, since he seems to do better with one over the other based on mood rather than skill. It was also determined that I felt confident to start acclimating myself into the feeds, so we did for dinner!

I sat at the table while the psychologist did the first half of the dinner feed. Jax did not cry going into the seat like he has every other time, but you could tell he wanted to out of habit. Jax had spaghetti puree and choked that down, but actually did bring up a bit of vomit in his mouth, but the doctor insisted he swallow it... and HE DID. I learned the technique of how to push his chin up, look him directly in the eyes and say things like, "NO Jaxon, swallow". So far, he has each time, hopefully that continues as I start taking over (eek). I stepped in for the last half of the feed as the doctor sat next to me. Jax had 5 oz of milk and a decent amount of food, yay! The doc said that once I'm in the room alone with Jax (and they coach me by a mic in my ear), he will most likely regress and not take as much. I'm glad they told me this in advance so I don't feel like a major failure!

His overnight fluid-need tonight is down a bit to 625 mls (700 last night). I wish I could get him to drink water during the day to help that number go down, but he just doesn't want any. I even tried convincing him with a sticker book and it didn't work. Oh well, I'm just glad that he hasn't needed ANY formula by tube so far during this clinic stay.

Classic start to each feeding session.

Classic fist-bumps after each food goal in therapy.

Art therapy.

And these are the beautiful masterpieces that were drying in the sun, which are now gracing the wall of Jax's room.

We sure do have some amazing friends! Jax came back from dinner to these AWESOME balloons! Brady is going to LOVE coming here tomorrow!


D. said...

Another awesome update! And is it just me or does it look like Jax painted pictures of spaghetti? :)

Kimberly said...

He is such an amazing little boy! He isn't even taking baby steps, these are full steps forward with each of his meals. Way to go Jax!

Matt & Shana said...

I thought of spaghetti as soon as I saw the pictures too!! Annie you are so strong and you will do great when you are on your own with the mic in your ear, we are all behind you cheering you and Jax on!!

Candice said...

I have been following your blog for a long time (not sure how I found you guys initially) - and I am so excited for Jax and your family with the progress he is making! You will be great when you take over!

Heather said...

How exciting that you got to step in today. It will go great when you are taking over full time. Just you wait and see.

I love that last picture.

You are filled with so much hope and happiness, I don't know how you have so much but thank you for sharing it with me yesterday when I needed some. xoxo