Friday, July 16, 2010

2 yr physicals

We had an interesting check up at the pediatricians office today. 

Height - 32 1/2"
Weight - 22lbs 14oz
Head - 49cm
(Weight and height are under 5%, but his growth curve looks great)

Height - 31 3/4"
Weight - 21lbs 10oz
Head - 47.5cm
(Weight and height are well under 5% and not a good curve)

*They're such bobble heads :)

Jax's lack of weight gain for the past 9 months is a bit concerning. The doctor showed me his growth curve and I was in tears over it. I had a moment a feeling defeated by everything. We spend so much time and effort in getting food into this little boy, that seeing him just NOT gain anything in so long, and see his chubby arms and legs turn into thin sticks is hard. The doctor's concern was that Jax is going to see a new team of doctors on Monday for his Feeding Clinic review and she wanted to make sure she contacted them today in advance to have a conversation. She was nervous that they'd see Jax's growth curve and hospitalize him for failure to thrive and not finish the feeding evaluation.
We talked about his chronic diarrhea he's had for months now since this virus hit him, and we want to be proactive about a few tests right away. We took Jax into the hospital this evening to get an X-Ray of his abdomen to check for looped bowels since sometimes diarrhea is really just constipation (water flows over the solid waste). The pediatrician called me back once we were home and she said she found out who the new GI doctor will be and talked to him all about Jax so he understands his history. They've decided to have his stool checked for bacteria (which can happen easily with g-tubes) and for absorption issues of carbs and fat etc. So I need to contact the lab at the hospital and get exact instructions for each test. Hopefully we can get this all in before the feeding clinic evaluation to get any possible answers. We've done all this before without many answers, what's one more check, right?
I mean... Jax WAS diagnosed with CIPO, which would mean he can't absorb nutrients very well and has motility issues (constipation, bacterial overgrowth), but I'd love so much to think we're beyond that. Yes, maybe I'm dreaming, but let me.

The pediatritian also asked the GI doc to have a social worker at the appointment to possibly help me get more PT sessions for Jax. She also noticed his tonsils were a little bit large, but nothing too concerning. She didn't feel that it was a reason for any feeding issues, but wanted to watch it, and have me watch for snoring or open mouth breathing. I'll bring it up to the GI on Monday.

Brady's check up went great. He was hugging every nurse and doctor, and even the parents in the waiting room. That kid has some CHARM. The doctor is very happy with his weight gain and said he's a perfectly proportioned tiny guy. Which interestingly enough, she said Jax isn't THAT far off from him, they just don't like seeing zero weight gain over such a long period (or even loss). They don't want to see Jax gain tons of weight, but they want to make sure something bigger isn't wrong here.
Brady is allowed to be off whole milk, and he can have crushed chewable vitamins now (we were giving liquid vitamins in his milk). 

I've been given the number for a few pediatric optometrists to get the boy's eyes checked out. I was wondering if it could be a factor for their speech delay if they can't see completely clear. It's a stretch, but it would be nice to check it off the list as an issue. Jason and I both have really bad eyes, and I had glasses very young, so we'll get them checked out.

In development news, Jax took a few sips from a straw during his feeding therapy yesterday! It was the first "latch" I've seen from him since 3 months old. And Brady has officially been done with using a pacifier in his crib for over 3 weeks now. I didn't want to mention it until it was totally done. He was biting the ends off, so we left the bitten off pacis in his crib. This way they were there with him, but he couldn't use them to soothe himself to sleep. Eventually he grew tired of the useless things and I let him have a small car in bed with him. He falls asleep playing with the car. He found an old paci in the diaper bag during the appointment today and threw it on the floor. Yup, he's done with them. 
My boys are growing up!

*Do you guys like our new 2 yr old looking blog? I would love so much to update our "About us" area, but the last time I wrote up something new, Jax had this nasty step backwards the week I was about to change out the write ups. I wrote about how we had our miracle and all the amazing dreams we had ahead of us... I of course was mad at myself for being too quick to state such bold things. So I dare not temp fate and just leave it for awhile. I like to think the new design gives a fresh positive vibe. A much needed face lift!


Jenn said...

I am like you...I make a bold statement and then feel like I eat my words so I take forever to make changes when something is going good...I often hate to admit outloud when things are excellent! Love the new look :)

Jen said...

Just found your blog and wanted to say hi!
I have twin girls, Grace & Faith, born at 23 weeks, and 2 days apart.
Faith is deaf {wears bilateral hearing aids while waiting on a CI}, and Grace has a refraction of -19 bilateral and is losing her vision.

I spent a bit getting caught up on your story...
your boys are SO adorable.
touched my heart!!!

Alicea said...

The blog looks great, Annie. Try not to feel defeated, you are doing a great job. Each day with Kyle, I always say to myself "we can only try and do our best". Kyle has CF and also has absorption issues. He cannot absorb calories and/or nutrients without pancreatic enzymes and they help a lot! I wonder if that would help in Jax's case? Kyle also takes a liquid multivitamin every day, too. Because of his digestive issues we have to keep a close eye on Kyle's weight, too. At our last clinic visit they told us his growth curve was slowing, too. Disheartening...but I'm staying positive.
Hang in there, hon.

Laura said...

((HUGS)) I know we were told the same thing about C&E and the docs not liking to see a slowing growth curve and especially one that hasn't budged in 9mos... BUT!! I am really impressed with those numbers. Jax is holding his own with Brady, and that means a whole lot. I am sure that he looks thinner because of his absorption issues, he's got to work so much harder to gain the weight, and then he's now walking too. So don't feel defeated, just feel that you are still in this waiting game and that next big step. I think you got a hint of what that might be with the straw. YAY! Hang in there Momma, tomorrow will be a good day, a big day, a day when you can start taking more forward steps. Keep that About Us update at the ready, I know you're going to have some wonderful changes to make.

Melissa said...

I love the new look of your blog. When I saw it I said "AWWWWW" out loud. Cass is a peanut also. I have to go back to the pedi in a month to have her weight evaulated. Her growth chart showed a drop in weight after we stopped using the g-tube. (makes sense) They just want to make sure she is now sticking to her new growth curve. Last time she was 3% in weight.