Phew. Glad that's gone. No more Miralax! That has been the object of our disgust for the past year. I've told the doctor it doesn't work. We can't get her to take it, she stays constipated, she just leaks poop out into her underwear constantly and can't control it and it's freaking expensive! Couple that with the 5 day delay the stupid stuff has and we couldn't ever find a dosage that worked. We've complained for a year but were never offered any other solutions. Lo and behold the miralax cleanout for her colonoscopy didn't work as well.
They wanted to wait until her appointment in a week to offer us other suggestions but I don't want to wait that long. Not after the almost 10 days of "cleaning her out". She's empty now. Let's start this right away :) So they called me back today and she's being put on Milk of Magnesia 3 times a day. We gave her some yesterday and she did go. Woohoo! Never thought I'd be so excited about poop. Now, if we can just get her poop trained for the potty life would be peachy but alas....that won't be happening for a while. I'm shooting for poop training her by her prom, but we shall see :) This stuff is much better. It's just regular old medicine she has to swallow so we know she's getting it all as opposed to the Miralax that you mix with 8 ounces of water and just pray she drinks it all. It works within 6 hours so no more 5 day delays for it to catch up. It's still a little pricey and we will go through it fast, but hey...if it works. More power to it!
The poor kid. We noticed for several months she was "barrel chested" meaning her torso and ribs were rounded. It was very odd and kind of scared me. Come to find out, after she finally was cleaned out after her testing (she started pooping finally after the testing was done and didn't stop for about 5 days) all it was was poop. She was so constipated it was pushing her rib cage out giving it a rounded appearance :( Poor kid! She's straight up and down now and looks normal. I can't believe she had that much in there!
So Children's let us know today her biopsies were negative and they checked her for the proper enzymes to digest food and that was all fine. So it's not GI related which I'm bummed about. I was hoping they would find something. If there's nothing wrong, there's nothing to fix. *sigh*
She goes on June 2nd to be put on the appetite stimulant which we don't really want her on (plus she eats fine anyways). It's an antihistamine (basically like benadryl) so either she'll be hyper off the wall which we DON'T need, or she'll be all drugged up and out of it. Plus it messes with your platelets. Maybe we'll try it but not long term. Then I think on the 2nd we also get our final determination on the feeding tube.
Evelyn's doing okay. She was pretty touchy and cranky for about 5 days after. I think her schedule was screwed up for so long prior to the testing that it's taking a while for her to get back into the swing of things again. She's still pretty cranky though. I hope she goes back to her semi normal self soon!
That's all for now.
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