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Friday, January 6, 2012

Broken extension tubes and progress

I've lost track of exactly how many times formula has leaked all over Raya's bed this week. Plus the one last night where there was a little but left in the bag and I forgot to turn the pump off so it dripped and splashed all over the floor. Some of the leaks/spills have been because Raya is a smart little toddler who has figured out how to peel the hypafix tape off of her stomach and unhook the extension tube from her MicKey button. That happened twice this week. The other problem we've been having is that the MicKey cath tip extension tubes keep breaking. The part that hooks to the pump set breaks off, which results in 2 problems. 1: if it happens during a feed, the formula goes everywhere, and 2: if it happens during or shortly after a feed, everything in her stomach runs out everywhere. If the tube is clamped it's ok but if not, she takes the clamp off and there's no stopping whatever is in her stomach from running out. This is what it looks like:
The tip is missing, the clamp is pulled off, and there's another load of laundry to wash. :)
It's kind of annoying. We've gone through 2 or 3 this week alone. It's a good thing we have a little stockpile.

Little missy isn't feeling very good tonight. We had OT this morning, played at the park for 2.5 hours (thank you, beautiful AZ January weather!!!), had PT, then had a friend over to play for the afternoon. It was a busy day with nothing but a 10 minute car nap so I think it was just too much excitement. The nice part is that right at this very moment, my normally squirmy girl who doesn't normally like to snuggle is cuddled up on my lap.
Both of Raya's therapists that saw her today commented about how far she's come and how great she's doing. I couldn't agree more. She is what the early intervention system is all about. Without the therapy services she's been receiving, she would be a completely different girl. She IS a completely different girl than she was a year ago, and so many of the concerns we used to have are no longer cause for concern. THAT is what the early intervention services CAN do for families. We have been so blessed to get in front of the right doctors, nurses, and therapists at the right times and Raya's life will be so much better because of that.

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