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Tuesday, January 25, 2011

And just like that, the bleeding stopped

Thankfully, whatever was bleeding in Raya's stomach was kind enough to stop on its own so that we didn't have to do anything unpleasant like go have an endoscopy. I'm not sure what caused it. My only theory is that she must have gotten her tube caught and tugged on a little bit and it irritated the inside of her stomach and made it bleed. The tissue around the tube can be very delicate and even though there's no granulation tissue on the outside right now, it doesn't mean there's none on the inside. We learned that the hard way. :)
OT is going well. I think going to OT is just as important, if not more so, for me than it is for Raya at this point. With us only going once a week, it really doesn't benefit her unless we are able to continue with the activities at home. It would be like only exercising once a week. Unless you exercise more frequently so that your body can get used to what you're doing, it is very difficult to make progress. I feel like at this point in OT, it's more important for me to learn some of the theory behind what we're doing and learn to set realistic short-term goals so that I can measure our progress. I'm in that "new and exciting phase" still. :) Our OT has given me a lot of ideas on how we can adapt things we have at home or make little changes with the way we do things at home that will push Raya out of her comfort zone a little bit.
I've also started working on a little/big project that I think will be helpful for her and protect her from herself. Up until now, we haven't worried much about her pulling out her GJ tube. She really doesn't mess with it as long as she has a shirt on. When she first got the tube, they told me to make sure and keep a snap-crotch onesie on her so she wouldn't bother it but that made it hard to access her extension tubes. Anway, in the last few days, she's learned to take her pajama shirts off. When she wakes up, instead of throwing fits so we'll know she's awake and get her out of bed, she sits in her bed and plays with her shirt until she gets it off. Then she plays with her extension tubes. One day, she had even taken the tape off that holds the tube onto her skin and the tube was just dangling from the port. It's kind of scary when she does things like that, especially because she has a GJ and not a G tube. If the GJ comes out, it has to be put in by a radiologist at the hospital which would be a giant pain in the rear, not to mention risk of infection if it comes out, pain/discomfort/trauma of another procedure for her, etc. SO we need to do whatever we can to protect it.
We're also trying to prepare ourselves for when she's old enough to go to nursery at church, which will be in May. Even if she knows not to mess with her tube, other kids might be curious about it and pull on it or it could get caught on things when she's playing, etc.
What I've decided to do is make her some kind of strap or band to wear around her stomach that will protect the G tube from getting pulled on, played with, etc., and will also hold the extension tubes in place so that they don't have to be taped to her skin, which would also make it so that we could unhook the extension tubes when they're not being used. Or at least give us a place to tuck them in when they're not being used. It has to be stiff enough to hold everything in place but light enough to not be too hot when it's hot outside. I'm HOPING that I can figure out how to make her something like that. It will at least be a fun experiment. :)


  1. first thougth that comes to mind when you mention the stap - bella band. probably way too big for her, but if you'd like, to save you time, i'd be more than happy to send you my four (in four attractive colors). they never fit me very well anyway. stretchy, i think they're breathable, but not sure, never really wore them!

  2. What an inspiring story.

    I recently came across this website (look for ways to get my daughter's weight up) . It's a great resource for kids who don't eat and feeding tubes and different treatment options. It's a great resource.


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