Made of Gray

2 days until 6

Holly D Gray2 Comments

Last week we took Caleigh to the orthopedic doctor. We go every six months or so to check on Caleigh's hips. He wasn't planning on a hip x-ray, but I showed him the difference between the length of Caleigh's right leg compared to her left. Since Caleigh just had a big growth spurt and her wheelchairs had to be adjusted two inches in the seat alone; he felt it was a good idea to check.

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For the past two years Caleigh's left hip has been out of the socket 30%. This x-ray showed that it is now out at 50%. This means a couple of things. Hip surgery is on the table within the next year or so.....if we decide to do it. We have the option. There is a lot to think about until then or maybe we will just think about it when it actually gets here. I choose to wait.

Caleigh's blood sugars have been better since we added back in the night feed. Since the Acarbose wasn't doing anything consistently to her glucose stability we went ahead and took her off of it. She seems happier off of it and her stools are getting better. Her sugars are still irregular, but better.

This morning we took Caleigh in for an upper GI study. This is where they put a water soluble barium in her g-button and we play the game of watching it try to exit through her intestines while taking intermittent x-rays. Caleigh's first couple of years were full of these studies and we knew the radiology staff by name. I couldn't believe it, but Caleigh's last upper GI was on June 6, 2009. At that time, the barium traveled through Caleigh's intestines in 30 minutes. Way too fast.

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I've been explaining the procedure for a few days getting Caleigh ready, but she doesn't remember ever doing it. So as soon as we walked into the hospital she went to her doctor folder on her iPad and started asking for her GI doctor. Then she started saying that she was scared. I had a light bulb moment and realized that she thought that she was there for a scope, which her GI does do. So after I explained that she was just there for pictures of the glow in the dark belly juice, she repeatedly said she was happy. From then on she was relaxed and happy. What a relief.

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This time the barium traveled for an hour and a half. Better than before, but still too fast. This transit time just confirms the dumping syndrome that Caleigh has been experiencing. Slower feeds are just going to have to be apart of her life. Goals are changed and rearrange. It's fine. The good news here is that there aren't any blockages or narrowings causing issues. Very. Good. News.

It's two days until our big girl turns six years old. She has a few travel plans in store for her birthday weekend. 

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