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Wednesday, February 22, 2012

Pardon me while I brag

I am SO proud of Raya today! I'm also proud of the phlebotomist that drew the full 10ccs of blood that she needed on the first poke. :) Raya has a reputation for being difficult to draw blood from. Her veins are small, "valvey", and they tend to roll and/or collapse. I can count on 1 hand the number of times in the last 2+ years that anybody has gotten the amount of blood they needed out of her in one stick. (I think today makes 3.) Today's blood draw was without a doubt the easiest & best one we've ever had with her.
She's such a smart girl. As soon as we walked into the drawing station, she knew what we were doing and totally took it like a man. Only better than a man because she didn't whine. :) She sat on my lap, pulled the pad down that goes across in front of us and stuck her arms out. (another sad but cute moment :)
I told the girl that Raya's usually a hard stick and puts up a pretty big fight so she got another lab tech to help hold her still. (the other girl did Raya's last set of labs so she knew what I was talking about :) Raya watched what they were doing the whole time and tensed up a tiny bit when she saw the needle near her arm but then she relaxed and did not even FLINCH when the needle went in. The lab tech got the needle in the perfect spot on the first poke and got all the blood she needed faster than anybody ever has before. Raya sat completely still the whole time (which is SO out of character for her) and didn't make a peep. She's such a tough girl! When they were done, she picked out some green coband for her arm and we put some on her tubie doll's arm too:
Is that not adorable? And for the record, I keep trying to put the baby's clothes on but Raya just rips them off. Her jammies aren't G tube friendly anyway so for now, the doll just stays clothingless.

Our GI visit was good aside from the fact that I was 10 minutes late. I've only been late to that office twice before and only one of those was my fault, and they were both over a year ago so it's not like I make a habit of being late to those appointments. The office staff was crabby about it and the medical assistant that took us back (who we've never seen before so she must be fairly new) was pretty snippity. She kept making reference to the fact that this would be a really short appointment because we were late. Finally I said, "Well, I guess the doctor and I are even then because I had to wait 30 minutes for her to get here once when she was stuck in trafffic." She was much nicer about it than everybody else. She said, "Don't worry about it, I've kept you waiting so many times and you've always been very gracious about it." See why I like her? :)

I would have been there 15 minutes early but when I dropped the kids off at school, I felt like there was something in my contact lens so I took it out & realized there was a hole in it. I had to put it back in so I could see but it was scratching my eyeball and making my eye water and I knew it was going to drive me crazy so I had to go home and take my contacts out & put my glasses on instead. I felt bad for being late, especially since we were one of the first appointments of the day, but for cryin' out loud, it was either be a few minutes late or else not be able to see out of my right eye. On a more positive note, Raya's doctor told me I look like a kid in my glasses, which I appreciated. :)

Things were a little crazy today because apparently they've switched to electronic records so that big fat chart that weighed 5 lbs the last time we weighed it is now gone. The doctor said that all the doctors hate it and it makes her feel unorganized and they're having all kinds of problems with it. Anyway, Raya had lost almost a pound as of our weight check a month ago and is now slowly but steadily gaining. In the last 2 weeks she's gained about 2 oz which isn't great but it's still a gain. She's up to 27 lbs 13 oz which puts her in about the 50th percentile for weight. Unheard of in this house. :) Percentile doesn't really mean much to me anymore though. The rate and consistency of growth is more important than the actual percentile, although I'm glad that Raya does have some cushion weight so that at some point when she's ready to do a tube wean, she'll have a little leeway on what she can afford to lose.
We're going to start fortifying her "sour cream" with a little bit of oil (olive, coconut, canola, or safflower) so that the small amount of food she's eating will be "worth" more. This has been a hard concept for me to get on board with but right now the amount she's eating is so minimal that I'm fine with adding a few calories. For now we're going to keep her calorie intake at 990/day, which I think she'll do fine with. I don't think she needs to go higher than that right now.

I had kind of been dreading this appointment because I hate having to report that things have gone backwards. We had been doing so well before she got sick and now we're back to minimal oral calorie intake and it's all on Raya's terms. She found a baggie of pita chips in my purse during the appointment and spent the rest of the appointment stuffing pita chips in her mouth. I started her back on Periactin last night and I suspect that might have had something to do with it. It's been about a month since she had it last so I'm anticipating some late nights this week. (it gives her insomnia) We discussed one other med we can try if the Periactin doesn't get us the results we're looking for but I need to research it before we try it. I think the Periactin is a good option for now though.
Since it had been a while since Raya's last GI labs, the doctor ordered a few just to make sure everything is where it should be. We'll be able to get those results on Monday but I'm not anticipating any issues there.

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