Monday, December 30, 2013
It's been another awful one for my girl! She didn't sleep much again last night. She dozed off around 11:30 and we immediately went to bed as well. She woke me around 5am making fussing noises. Thankfully she wasn't gagging (I left her g-tube drain on her all night and she was getting pedialyte so maybe that helped). I'm not sure if she ever dozed back off though. Today she hasn't had any throw ups, but this morning she was still retching here and there and she had a serious case of the protruding tongue. When I say her tongue was hanging out nonstop, I literally mean nonstop! And not just sticking out a little, it was usually protruding out so far that she looked like someone trying to impersonate Gene Simmons! So far out that it seemed she might actually choke on it! I've seen her do this at least once before, but it's definitely disturbing. She is SO tired, but for whatever cruel reason, her body is NOT letting her sleep! We did finally get her to doze off at one point (and we were all breathing a sigh of relief), but it only lasted 15min or so and she was back up and fussing to boot! She has been fussy off and on today, again I think it's just that she's so frustrated with her body! She's been rubbing at her nose again until it's a bright shade of red. She gets frustrated when we try to restrain her or prevent her from doing it, but I'm not sure how much more assault her nose can take! Even her left hand is all dry and crackly around her knuckles from putting it in and out of her mouth all day long! Poor thing, she just can't catch a break! This is day 5 of bad days and I tell you what, this is getting old! Only four good days and then five bad days?!?! That's ridiculous! Something has got to give! My girl cannot have more bad than good days! She just can't! It's SO unfair! Please say lots of prayers for her! That she turns this around ASAP! Preferably right this second! Ryan is also having ongoing issues. The bumps on his tummy/legs are fading and they are definitely less red today, but they're fading to a purple color and look almost like bruises (kinda like when Reagan gets mosquito bites). And then this afternoon he had a new bump pop up on his left heel and he would only walk on his toes (only on that foot)! It's like it hurt to walk on it! He seems better now, he's finally putting weight on it, but what the heck?!?! Can we catch a break already?!?! Very annoyed over here and praying for relief and resolution of these issues!