We are still here!

I seem to be lacking the enthusiasm to post recently. I have written a handful of entries on paper, but haven’t gotten around to transposing them here. My apologies.

I think, perhaps, that part of my reluctance comes from being afraid of the progress that Ellie has made. That somehow, if I write it down, it will all disappear. I know that doesn’t make much sense, and I don’t even really understand it myself, but we’ve experienced so very many moments of being thrilled with her progress, with her health, to have her take two giant (metaphorical) steps backward, and I find myself feeling disappointed.

For those of you who might be wondering, Ellie is at home. She is off bipap. She is still doing well. It’s been a couple weeks now, our longest stretch ever off the vent, and I have everything crossed that she continues to do well.

She got a nasty cold (the type that turns into The Man Cold, when it affects fully grown men), and sailed right through, barely needing any support other than an occasional suction. She can cough, she sneezes, she seems to be coping just fine.

Our physio gave her a pair of hip huggers, to help with her gait, and to counteract the tendency she has to walk with her legs spread far apart. We also have walking wings, which save my back, but she doesn’t think much of them. She hates her standing frame, so I’ve stopped putting her in it. She’s also not a fan of the crawling frame, although I’m not ready to give up on that one quite yet.

Ellie is remarkably quick with her bum scooting, although for the life of me I cannot understand why she doesn’t just crawl. It has to be less effort than the scooting takes! She is fairly proficient at cruising, and she even lets go, but no solo steps as of yet. I’m not in a rush, honestly. If she could walk, she would walk. Just like the talking, if she could, I am sure she would.

Ellie has been going to bed at night with no complaints, but about an hour in, every night for the past week, she’s woken up crying. I don’t know if she is having a nightmare, if she’s teething, if her belly hurts. All I know is that for the first time in her life, she cries, she wants her mommy, and I am there.

We’re slowly weaning off our nursing hours. I was happy to quit cold turkey, but in case we need them again, it’s better to go slowly. We’re also trying to order the equipment Ellie needs for OT and PT before they reassess her for the At Home program. I’m sure we won’t qualify for another year, but it was nice while it lasted!

I’m working a lot these days. It’s good for my brain, but not so great for my overall energy levels. That might also have something to do with my lack of posting. When you spent 8 hours in front of a computer screen, it’s the last thing I want to do when I get home.

Off to put my feet up, and snuggle my babies.

xo