Wednesday, April 11, 2012

Feeding follow up

The kids and I went to the YMCA yesterday for the morning and had a good time, although it was SO busy with families having off for spring break. We finished the morning with going to the library, which was cute to see the boys sit next to other kid's at the little tables and listen in to their reading.

Today was Jax's feeding follow up. Jax gained a HALF pound - that's awesome! I felt hopeful going from the weigh-in area to the feeding room (not that Jax was doing a feeding, but that's where we meet to talk). The not-so-awesome-part is that even with a half pound of gaining, it puts Jax at 24.1 lbs. That's still considered "red zone", even for his height. That means that if a kid came to them weighing this at his height/age, they'd actually have to consider putting a temporary tube in (NG - nose) to give extra calories to help. So the point is, even though Jax gained, and even though he intakes a good amount during the day and even though his behavior is a lot better, he still has to have his full night feeding to play catch up in weight. With nice weather coming, he'll be more active which is more calorie burning, but he will have less sick days too. So we can't start the last weaning process yet, but he's one step closer.

I tried so hard to not have expectations, but with so much hard work for the last month, I guess I just wanted the grand prize at the end of starting that last process - instead, we have to remain the same and hope for more weight gain. How much weight gain, I have no idea.
I threw Brady on their scale just for a comparison, but he had his 2 shirts, fleece jacket, jeans and shoes on. His weight was 30 lbs, so I assume he's prob around 28ish and some change. So a 4-5 lb difference, that doesn't seem too far off. Ya know, I just don't know.
They want Jax to take advantage of the tube for now and gain some reserves so when he's off it and gets sick, it's not as hard on him.

I get it, and I totally agree with all of it. I just got my heart set on starting to wean him this month. We go back in 5 wks for the next checkup (May 16).
I admit that the easiest food to give Jax is that last feeding at bedtime. I mean really, I just hook him up and he goes to sleep. Around 9pm I take it off and poof - he just got a high calorie 8oz meal. I just want him free of "equipment" and I know that in the end, it's me being selfish and wanting him to be "normal".
He'll get there, he's so close.

The psychologist asked if there have been any new or different behaviors and it totally reminded me about his OCD things (I totally forgot at this point). I told her the new behaviors and she put them in his file. She said that children who go through new things that take control away from them will often act out in ways like I described. She's sees it in divorce and family changes, and of course in feeding disorders like Jax's that being worked on. She said that of course some of it was being the age of 3, but the best thing I can do is observe, take note, and just always be aware. She said that when it is a reaction to control, it will typically dissolve. She wants me to keep her updated at the next follow up, so I feel better knowing a professional feels that it's fine for now, but it's something to be watched,  so I wasn't silly for telling her. I mean, she did ASK I guess!

I told her I felt silly noticing these things because WHAT ELSE could possibly be wrong with my kids, and I'm sure that mother's throughout time didn't have to run to the doctor to report their kid's behavior. She laughed and said that in all fairness, babies like Jax and Brady didn't survive 20 years ago (mono/mono twins), so all of the possible "issues" I see, are technically a modern mother issue.
(sigh) I guess.

So, I'm still kinda just waiting on the side, not totally knowing a timeline, or complete expectations. I know what he needs daily to be in the gaining zone, and he's fed more than that with the extra night feeding, so I guess we're on a positive path. I had the nurse look at Jax's prolapse site and said that the GI doc said to not do anything about it since Jax would only have his tube for "months". But his prolapse is worse, so I figured I have them peek. The nurse observed it asked when he was expected to get his tube out. THE MILLION DOLLAR QUESTION, that I of course didn't want to look naive in asking, so she said she'd go ask them. FIST PUMP (I liked that she asked instead of me). She came back in and said that they said it would be a few months, so the nurse wanted to treat it with Silver Nitrate, and gave me instructions of what to do over the next couple weeks.
I will admit, I felt better after knowing the psychologist and dietician said "a couple months". So it very well could still be this summer. I mean, of course it could. Someone needs to slap me.

I did a phone-pic-dump, and found this cute photo of Big B.

The boys at the library yesterday.

Brady doing a puzzle and I noticed something. He loves to problem solve and do puzzles where you fit the shapes together to make a final shape or picture. Jax does not. Could they be any more opposite?

Blurry phone-picture of the boys this morning on the way out the door. Now Brady doesn't want to be without a hat.

The nurse had me take a shot of Jax's tube-site so I know the original size of the prolapse (the stomach tissue coming out). Sorry if this grosses anyone out.

I had to change his dressing and always find it weird what silver nitrate does. I have to put some cream on it 3x/day for the next two weeks. I can't wait to get this out of my babies' body some day. I know we're lucky to even have the chance.

*OH! And Jax's pediatrician called to say she is still setting up which labs an Immunologist is recommending that Jax have taken and tested. I'm hoping we can just wait until Jax's next hospital visit in May to take care of it then, but we'll see what she says when she calls with the details.

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