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Sunday, July 24, 2011

Having fun in Idaho

Aside from all the meltdowns, Raya has been having some new and fun experiences in Idaho.

Climbing on the table to get into the bag of REALLY spicy Hawaiian BBQ rings, which didn't faze her little underdeveloped taste buds one little bit :)
 
Swimming in the wading pool with cousin Curtis, whose flat stomach really accentuates Raya's big ol' belly :)



Playing outside in the beautiful weather which led to getting one of her little bum cheeks sunburned since it was hanging out of the swim diaper a little :)



Actually going to sleep while touching another human being, which is pretty much unheard of for Raya. She snuggled with Grandpa while we had a DATE NIGHT!! It was fabulous. :)

She's warmed up to people a bit since we got here a week ago and she's doing a little bit better about not clinging to my leg and whining every second of the day. She absolutely LOVED the little wading pool. I think she was in it for a couple of hours before I finally dried her off so she didn't become hypothermic. The water was cold and they were in the shade with a breeze blowing. Since she has NO sensitivity to cold (unless it's something cold touching her teeth or tongue) she would have just kept on playing all day. I couldn't find her swimming suit so she just played in a swim diaper, and one of her cousins was a little intimidated by her tubes. She was a little afraid to get in the pool with Raya until her mom explained things to her. Then she was fine with it and the kids had a great time. I'm SO grateful to have plenty of people to be around who don't make a big deal about Raya's tube. I'm glad that my other kids have had the experience of living with her and her tube so that they will grow up thinking that things like that are no big deal and will be more kind to people who have visible physical challenges like feeding tubes, wheelchairs, glasses, leg braces, etc. because of their experiences with Raya. Or at least I hope they will. :)
Before we left, I wondered if I would notice a big difference with Raya missing several therapy appointments. She has DEFINITELY been acting different since we left home but it's hard to tell which of her behaviors is because of missing therapy and which behaviors are just from being in unfamiliar environments. One definite difference that is from missing therapy is her lack of interest in food. She has still been asking for bites, but the longer we are away from home, the less she asks for things like crackers & cheerios, and when she does "eat" them, she is swallowing less and less, and spitting out almost everything again. Today she got a piece of fuzz from her blanket in her mouth and the way she was acting, I thought she was going to gag.
I've also been doing a lot of observing. Raya has a cousin who is 1 month and 5 days older, one that is 2 weeks older, and one that is 4 months younger. If someone who didn't know any of the kids was to watch them all playing, I think they would assume that Raya was closer in age to her 16 month old cousin than to the two who are 2 weeks & 1 month older. Her movements aren't as steady as the older two, she still holds her arms in a high guard position a lot when she walks, and just overall, she seems closer to the 16 month old than the other two. I'm not saying it's a good or bad thing, it's just been interesting to observe. In a way, it's reassuring to me that the therapy we're doing with her does have a purpose and we're not just wasting our time. The older cousins are a little ahead of her communication-wise too, but that's one of those areas where they make leaps & bounds at this age so it's hard to tell where she'll be in a couple weeks or a month.
Anyway, we have had SO much fun and we are LOVING the break from the blistering heat in Arizona. I think Raya's about ready to go back home and sleep in her own bed and start up with her therapies again, but we really have had a great trip.


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