Ok, the bad news first...
Charlie isn't doing so well. She started requiring a lot more oxygen and even on max O2, she's not satting well. She'll still do okay here and there, but she can go downhill VERY quickly. We took her to a pedi and he's very concerned and trying to see if he can get her in to see pulmonary ASAP. Her appointment is for Dec. 3rd but she can NOT wait that long! And if we take her to the ER, they are just going to do what we do at home...positioning, suctioning, O2, monitor her, ect. Only if she gets very bad will the hospital benefit her. So we are just holding off for now on taking her. She doesn't need the stress of the hospital if they won't help her. The pedi said she's not moving air well and her lungs are hyperexpanded. He thinks it might be because of her spasticity and that's not going to get better. We just have to prevent it from getting worse. If Children's can't find it in their hearts to squeeze her in, we'll probably be driving to Cincinnati.
And now the good!
Charlie is talking up a storm! Ok, so not really talking, but she's vocalizing a ton. She has happy noises and grumpy noises and "pay attention to me noises". LOL She talked on the phone for the first time yesterday! Tim was asking how she was doing and I said she was being talkative so I put the phone up to her ear and as soon as he started talking to her, she smiled really big and cooed loudly at him. So exciting! Also, she's playing "peekaboo" with me. Before, when we played, she would just grin at the end. Now, I throw a washcloth over her face and ask "Where's Charlie?" and she grunts at me as if to say, "I'm under here mom!" I got some video of it, but I have no idea how to get it off my phone. I have a cord coming to me in the mail, so I can put it up then.
And I think I'm about due to post more pics so I'll do that later today. :-)
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3 comments:
I hope you can get in to see the doc a lot sooner! Hannah has irregular breathing too and its from her CP- we have been doing intensive stretching and Yoga for Hannah and the results are increadible- maybe you can try that for now- hugs and huge congrats on the talking!!!!!!
Oh man I hope she starts getting better, poor baby :( Yay for letting her voice be heard though!!!
Sorry to hear about the respiratory troubles; no fun. Hopefully they can get you in soon - and be helpfull, too. Yay for the talking! Little talks are the best :)
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