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Tuesday, November 22, 2011

Still eating sour cream

I'm not going to say that Raya likes sour cream because if I do, then tomorrow she'll hate it, but she's now been eating it for a little over 2 weeks. I haven't given it to her every day because I didn't want her to get tired of it, but she's been pretty consistent with wanting it when it's in front of her and she hasn't started spitting it out & saying that it's yucky yet. And that, my friends, is huge. :)
Tonight she was crying so I picked her up and asked her if she wanted some dinner. She said yes and then said, "Ah-dah BEEM!"  (translation: I want sour cream!) So of course, I indulged her. :)
I started her out with 2 tablespoons (which equals 1 ounce, by the way) and a few minutes later, she was asking for more "dah-beem". She makes me laugh so hard when she asks for it sometimes because she waves the spoon around in her hand and the way she says "dah-beem" reminds me of the part in Forrest Gump when they're in the hospital and Forrest asks Lt. Dan if he wants some ice cream. :) Anyway, she ate the first 2 tablespoons and asked for more, so I kept giving her more a tablespoon at a time until she started painting herself with it. When all was said and done, she ate a total of (hold on to your hats) 7 tablespoons! That was easily the most she's eaten of anything since she went off of a medication in September and got knocked for a loop. She ate other things today too. This morning, she mutilated a couple of slices of bread and when I pieced them back together, there was about 1/3 of one missing. She also ate about 5 crackers and some dry cereal. All together, she had almost 200 calories today, which is VERY encouraging. Her runny nose is getting a lot better so maybe the periactin is starting to work for her.
Speaking of crackers, the little stinker got a hold of the brand new box of wheat thins that was sitting on the counter (apparently still within her reach) yesterday afternoon:
She doesn't look sorry at all, does she. :)

Her physical therapist came this morning and we talked briefly about the results of Raya's recent assessment. There were 3 areas where she fell behind a little bit. It would be nice if I could remember them. :) There was one area where she was at a 22 month level, so that's close enough to normal that we're not really worried about it at all. In the other two areas, she was at a 17 month and 18 month level, so about a 6 month delay. That actually made me feel a little bit better because we're not around very many kids Raya's exact age so sometimes I start to doubt if there's really any delays and wonder if we're wasting our time continuing with PT, but hallelujah, abnormal test result, we're not wasting our time. :)
One of them had to do with object manipulation (ball skills, etc) and one had to do with being able to hold herself in certain positions or play in certain positions or something like that (there's a lot more to it but I can't remember now). One of them was a little bit skewed because of the way the test is written so it made her look a little more delayed than she really is but she's still not quite up to where she should be at this point on it. Overall, she was classified as "mild delay", which was pretty much what we expected.
I've definitely noticed now that we're doing PT every other week instead of every week, Raya's legs and feet start to get REALLY tight by the time her PT comes again. Today, she also had some tightness in her neck that hasn't really been an issue for a while. At the annual review with our support coordinator on Friday, she was asking me what our goals for PT need to be for the next 3 months and I had no idea what to put down so the doubts started to creep in again. After today though, I'm feeling better about things and I'm glad that we're still moving forward with PT because it IS still helping her. She sees the orthopedic specialist next week to see if there's any need for bracing or orthotics of any kind (which there won't be). I'm fully expecting it to be another one of those appointments where we walk in and the doctor looks at her and tells me how good she looks and scratches his head as to why we're even there. :) 

Thanksgiving is only 2 days away and it will be a far cry from the Thanksgiving we had last year. Kaida woke up sick that morning so she and Raya and I stayed home while Donny took the 2 older kids to the family gathering at his parents' house. As much as I would have liked to be there, I was a little relieved that I wouldn't have to wrestle with Raya at someone else's house, clean up her puke off of someone else's floor, try to remember to bring everything she'd need for the weekend, and try not to feel sad that my 1 year old was still on elemental formula and gagged at any attempts to feed her solid food. Holidays and events that revolve around food hurt when you have a tube fed child. It's hard to see everybody else's kids eating and not know when or even IF yours will be able to. Even though we still have a long way to go, this year will be MUCH better than last year and Raya might even take some bites. Since we'll be eating Mexican food and traditional Thanksgiving food, there should at least be some sour cream there. :)

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