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Tuesday, January 24, 2012

Weight check, bump in the road & more progress

January has been a wild month around here. We had a busy weekend that started with our lousy appointment on Friday, after which I popped in to visit a friend whose daughter was in the PICU, and then drove to the other side of the moon to take pictures at the 1st birthday party of our little tubie friend Lily. That was the best way to end what had been a very stressful day! Here's my FAVORITE picture from the party:

The signs say "We ♥ A Tubie!" and Lily is the one in the high chair with the cute pink bow & black shirt.
Lily's clever mom Alix came up with the idea and I LOVED it! The cute little girl on the right side holding a green balloon is another little tubie friend, Whitney. I wish Raya could have come with me but it was neat to have 3 tubies represented. :) I am SO thankful for our tubie friends! :)

So this morning, Raya had a weight check at the clinic she's usually seen at. As usual, they weighed her sans clothing & diaper, and what do you know, she's NOT 29 pounds like the people at the downtown clinic said she was when they weighed her fully clothed with a wet diaper. At Friday's appointment with the dietitian, they said she weighed 13.2kg (29 lbs 1.6 oz) and told me we wouldn't need a weight check today because she had gained 2 pounds since her GI appointment in December. Today she weighed 12.27kg (27 lbs, 0.8 oz). Obviously, that's a huge difference and I KNOW she didn't just lose 2 pounds over the weekend! Going by the accurate weights from her GI appointment in December & today's weight check though, she has lost about 2 oz in a month which is kind of a bummer. I've been counting every calorie to make sure she's hitting her daily goal but she might be outgrowing that number & we might need to increase it a little.
We also had the pleasant surprise of running into Lily and her parents at the clinic this morning. Raya & Lily had never met and they were very cute and friendly with each other. :)

So on to the little bump in the road. The stinker decided to fall off of a chair in the kitchen last night & because she was actually crying, I knew she had hurt herself. Of course it was the same arm she broke in November. It's definitely not her wrist this time though. She isn't able to raise her arm above shoulder height and her arm isn't swollen anywhere so I'm pretty sure she injured her shoulder. I'm really not sure what they'll even be able to do for her but we at least need to know what she hurt and make sure it's not something that needs to be treated. Since her weight check was conveniently at the clinic where all the specialists are, I was able to schedule her a visit with the orthopedic doctor on Friday morning right after OT. You know, I used to feel like 6 appointments in one week was totally overwhelming. Now it's just a minor inconvenience that we're pretty much used to. Thank goodness we don't have that many every week.

In other news, which is very good news, Raya has been taking in a LOT of calories by mouth. Since our visit with the dietitian, I have been trying harder to get her to drink some of her formula. It's a lot of work. One thing that has held me back from offering her more formula to drink is that I have yet to find a cup that she really likes to drink out of without pouring it all out. She's not good at the no-spill sippy cups because they require more effort than she has the motivation for. She likes drinking out of open cups but they're much too easy to spill. For now, the most reliable method of getting formula in her mouth is to use one of those refillable ketchup squeeze bottles with the pointy lid. It looks pretty gross to see her drinking out of that, especially since I don't like ketchup. Anyway, yesterday her respite provider and I were able to get her to drink a total of 150ml for the day (5 oz) so that was pretty exciting. In order to get her to drink it, we have to give her 2 oz at a time in the bottle and then sit right next to her and keep telling her to take another drink. She has been very easily distracted this week (more so than usual) so it's very time-consuming to get her to drink it.
Between the formula she drank and the nutrigrain bar, yogurt, & little nibbles of hamburger bun she ate, her calorie total yesterday was a jaw-dropping 400 calories. I had to keep adding it up a few times to make sure I had it right because I couldn't believe it. She's not off to a great start today between having to go to her weight check & then to get a tire fixed (which turned into having to buy a new one thanks to the SCISSOR BLADE that was all the way through my tire!) and then compounded by the fact that her arm hurts & she's having trouble feeding herself with her right hand. Not to mention being extra tired from going to bed late & then waking up at midnight with a sore arm & sleeping with Mommy on the couch until 4:30. So yeah, we need naps today. Hopefully she'll have a good afternoon & evening and be willing to drink her "choh-lit MEE-owk" (which is vanilla flavored formula) and eat some food.

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