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DC'd PT and Since we've been home...


Raya had her last clinic-based PT appointment on Dec. 2nd. Since she was diagnosed with cerebral palsy, she is eligible to have home therapy through the state which is more convenient and will cost us a little less than in-clinic. We will sure miss her awesome PT Hilary though!!

Practicing using both hands while side-sitting :)

Helping Kaida play with Mr. Potato Head while Hilary tries to get her
to engage her non-existent abs :)
I'm still crossing my fingers that Raya will be able to see Hilary again at some point because I really like some of the treatment methods that she uses but I'm excited to see how Raya will do with PT at home. Not to mention that I will be able to stop begging my poor friends & family to take Kaida while I take Raya to PT. :)

Since we've been home from Ohio, Raya's vomiting has been SOOOO much better. I'm 99.9% sure that the reason for the sudden drastic improvement is that they took out her GJ tube and put a new one in. I don't know if it's just positioned a little better in her pylorus (where the stomach opens into the small intestine) or what the deal is but that's the only thing even remotely resembling a treatment that they did to in Ohio so it must have helped. She's only throwing up a couple times a day now and it's not the nasty yellow/green stuff that she was throwing up. Now it's almost clear. Last night I decided to see if she could handle having her G tube clamped all night so it wasn't draining her stomach while she slept. I didn't think it would be a big deal since she hardly drains anything overnight anyway but yeah, it was a bad idea. She puked/dry heaved her little head off for about 3 hours this morning so I won't do that again anytime soon. That's the kind of thing that makes me wonder how in the world we're going to transition her back to gastric feeds. We can't feed her into her stomach and drain her stomach at the same time!

Another huge clue that changing her tube helped her stomach's ability to drain is what the drainage looks like now compared to what it looked like before. Up until the day they took the tube out, her drainage was anywhere from bright yellow to various shades of green, and it smelled really bad. Now it's almost clear and pretty much odorless. Occasionally there's yellow bile in it but it's pretty much always almost clear and there's a lot less of it now. Where she's at now is what we had hoped would be the immediate results of getting the GJ tube in to begin with, it just took 2 months and replacing the tube to accomplish it. I actually went for 2 or 3 days in a row this week without having to change her bedding and that hasn't happened in...well, pretty much ever. :) Then when I did change it, it was because she had a blowout. That has been an unfortunate side effect of how efficiently her body seems to be functioning now. Every time she poops (or "stools" if I'm being politically correct :) she immediately has bright red blistering diaper rash like she did when we were infusing her stomach contents back into her J tube. I feel really bad because it looks absolutely miserable but aside from cleaning her off really well and slathering up with aquaphor and medicated powder, there's nothing I can do to prevent it. I'm hoping that her body will adjust to the new increase in her motility and maybe that won't keep happening.

Aside from the GI symptoms, she's doing pretty well with other things too. She's more willing to walk now. She can take 4-5 steps and I've seen her do more than that once or twice. Most of the time it's still 2-3 and she walks sideways but she's starting to be more interested in walking. She has also developed a great bear crawl. It's pretty funny to watch. Overall, she seems to be a lot more comfortable and there is SOOO much less vomit now and those were the 2 main things we had hoped to accomplish with the GJ tube so I'm trying to focus on that right now. Yay, mission accomplished, even if it did take 2 months longer than it should have!

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