Made of Gray

Beating the Heat

Holly D Gray7 Comments
The past few weeks have been filled with swimming and staying indoors as much as possible. We officially hit 100 degrees and for Caleigh, or anybody really, playing outside isn't a long lived activity. These days we are swimming mostly in the evening before Caleigh's bedtime. Something about the end of the day, shaded pool and warm temps allow her to kick more freely than in the mornings. So we are going with what feels best for Caleigh at this point. It's a wonderful way to relax before bed.
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Caleigh has recently, in the past few months, started really chewing and licking on her hands. Honestly, It drives me crazy. I'm not sure if it's boredom, new habit, hunger, or sensory seeking. Her dystonia has just recently let her control her arms long enough to hold them in place to achieve this task. Maybe it's just developmentally catching up? If anyone has any tips...I'm open. I've tried reasoning, taking her hands from her mouth, redirecting, giving her something else to chew on, etc. At home it's not that big of a deal, but in public it shows a different view of our girl. She often times "checks out" from what's going on around her and starts focusing in on her hands. I've asked her why she does it and she says "I don't know." I asked her if it feels good and she says "I don't know". That sums it up for me.... I don't know.
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So with the new intense hand obsession, I decided to add another sensory item to our oral motor box. I bought 12 ring pops, broke the candy off, bought ice cube trays, added water and then stuck the empty ring pops on top to freeze. 
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So far Caleigh hasn't taken the plunge and stuck the pop inside her mouth. She plays in the melted water, rubs her checks and with my help rubs the cold pop on her lips. She seems to enjoy it. It hasn't been our cure all though.
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On the same front I decided it was time to check Caleigh's calorie intake. We went to the GI clinic, and did a height and weight check. Everyone that sees Caleigh comments on how skinny she is. This is a normal comment though considering her extremely chunky state of babyhood. This time last year Caleigh weighed 41 pounds. Today she weighs 31 pounds. She's dropped 10 pounds and grown a steady 2cm, ringing in at 36 3/4 inches. She is less than the 5th percentile on height and 100% on her weight. So I'm told that her height to weight is perfect and everyone is happy with her growth. The plan is to stop the weight loss by adding an extra scoop of formula to Caleigh's daily calories and go in for weight checks every month. We'll keep adding calories until the weight loss has stopped and then we will start to maintain the balance.
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Last week Caleigh's Goldfish passed away. I looked back at posts and we actually bought the little guy in October of 2010. That's a pretty good life span for a goldfish that never really got an official name. I'm contemplating different pets for Caleigh, but for now I think we are going to take a small break.
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On Wednesday, Eric and I took Caleigh to the local 4th of July parade. We've gone every year that Caleigh wasn't in the hospital and it's really become an awesome tradition.
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We always sit in the shade of the firetrucks and this year there was an occasional breeze to help out. Caleigh really understood about America's Birthday this year. We talked about it, read library books and did a little YouTube searching. Caleigh's favorite part of the parade was the high school cheerleaders that wore green and white outfits. When we got home she kept telling me that she wanted "to go in the car." She kept saying it over and over. Finally I figured out that she wanted to be in the parade. She wanted to ride on a float. Caleigh was extremely happy that I figured out what she was saying and I was too.
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