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Thursday, February 16, 2012

Belly laughs and chew toys

Raya is still not back to 100% but her mood has definitely improved. It's crazy how much she's been affected by getting a sinus infection. The broken arm right before the sinus infection probably didn't help either. Then there's the undesirable side effects of the antibiotics that have messed with her gut and the sneaking suspicion we have that her stomach is bleeding again... I'm SO glad we see her GI doctor next week!
For the past few nights, Raya has woken up in the evening screaming in pain. That's not something that's happened in a long time. Last night she went back to sleep pretty quickly but then this morning she woke up at 5:30 when Donny was getting ready for work and had a poopy diaper that had obviously been that way for a while. It was AWFUL. Suffice it to say we used a generous amount of the huge canister of ointment that her doctor prescribed when she was having major diaper rash issues before and then she and I laid down on the couch and watched Cake Boss until the big kids got up. (she's slightly obsessed with Cake Boss. Doesn't care about Sesame Street, but she loves Cake Boss.)
In order to try and alleviate some of the discomfort she's been having, I decided to try using a Farrell valve bag. I'll post pictures later but it's a crazy little contraption with lots of extra tubing that has to be hung at a certain height with the tubing at a certain height, etc. It took me a couple tries to get it all figured out but I think using it during her evening feed will help a lot. What it does is allow the stomach to vent during a feed by giving the excess gas/air a place to go. There is a bag with a long tube attached and halfway down the tube, there's a Y port. You plug the feed into one side of the Y port and the tubing from the bag continues down to a connector. That connector plugs in to the extension tube. When you start running the formula in, if there is more pressure coming out of the stomach than there is going in, the formula will back up the tubing towards the Farrell bag and allow the extra pressure to be relieved. Then when the stomach is ready, the formula will flow back down the tubing and into the stomach. It's pretty clever and hopefully it will help. If it does, we'll see if the new GI nurse can get home health to send us more because right now we only have 1.

Anyway, she IS doing better. :) She's still more whiny & clingy than she was before she got sick but she was pretty happy this evening. She was playing "Where's Raya?" with me. She would cover her face with the washcloth and say, "Wha-Waya?!" and then take it down and say "BOO!" One time when she had her eyes covered, I moved from being about 5 feet away to where I was 2 inches away from her face. I wish we'd caught that reaction on video because she had NO idea that I had moved closer to her and let out the biggest squeal and then laughed and laughed. We did do a little video but she already knew it was coming so her reaction wasn't quite as good. Still some good belly laughs out of her though:


In other news, she's still refusing most food but she has decided that she likes chew toys. It sounds terrible, I know. Her feeding therapist brought her a chewy tube on Tuesday and had a new baby toothbrush thing that Raya had never seen before but really liked. I went and bought her one last night because it was a great motivator for her. Today, I did 2 little "mealtime" sessions with her where I put her in the high chair and had her chew on the tube. We would count how many she did on one side and then do the same number on the other side. Once she had done both sides, I let her have the toothbrush and a little cup of water to dip it in since she likes to have water on it. She was a happy girl! She hasn't eaten a single bite of anything today, even though I offered her a lot of different things, so the fact that she at least did the oral motor exercises made me feel a little better.
We also had an IFSP meeting (individual family service plan) with Raya's service coordinator today and I just have to say that there is something to be said for a lady who can get through a meeting in under 30 minutes. :) She is wonderful and I'm SO glad we have her!

Oh, and speaking of belly laughs, I was reading through the blog analytics and saw that someone found this blog by doing a google search for "belly piercing gone wrong". Oh. My. Gosh. I laughed SO hard! Pretty accurate assessment though! :)

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