Back at Home

Hey Guys!! I've been meaning to update. We arrived home on Thursday. It turns out that finding time to get to the computer, with four other kids that are a little mom-deprived, has been challenging!

P365/6: Just arriving at home.

It's been really good to be back home with everyone. The kids have been so excited to see her and that hasn't let up. They each hang out with her throughout the day, taking turns on who gets to sit by her. She needs help with almost everything, and they're always happy to do anything they're able to do to help. She's quite frail and struggles to do most things on her own like she used to, so it's been nice to have so many helpers.

F E E D S

On the first day home, Thursday, we only managed to get 4-8 oz of water into her, as well as only 1/4 of her feeds (8 oz of formula). She couldn't tolerate more than that. It was pretty nerve-wracking because we no longer had the IV to ensure she was at least getting liquids.

Friday was a lot better. We managed to get all of the water she needed via water boluses as well as 3/4 of her feeds.

Then yesterday, we finally did it. We got her all the water & formula that she was supposed to have in a day. She was awake for maybe 12 hours yesterday, too, which is better than the 9-10 hours she's been doing daily for the weeks before. So, hopefully we'll be able to continue in this direction, and she'll keep gaining strength and energy.

Today I bumped her feeds up to 50mL an hour, which I believe should give her 4 hours off (from being on 24 hours). We'll try 60 mL tonight or tomorrow. If we can do that, then she'll get 8 hours off, which I know she'll love.

I N V O L U N T A R Y M O V E M E N T S

Another thing we're dealing with is the involuntary movements she's been experiencing for a while now have gotten a lot worse. It's like there's a wave to it from mild to moderate to severe. Sometimes she'll move completely normally, then other times it's mild involuntary movements (like just in one arm). Then sometimes it's a section (arm, head, and face). She's even had her ears wiggle out of control and her eyes jiggle (we're bad people because those two made us laugh a lot & she laughed a lot, too, with a "you have got to be kidding me"). But then it stops being funny when she gets these attacks where it's all over her body. She loses normal leg control, can't walk on her own, can't control her arms.

When we left the hospital, she was having this happen a lot, only it was more mild. The doctor was in there once and Emma's arms were going a little crazy. She (the dr) was able to feel her arms and see where it seemed to physically be coming from. She wanted to keep an eye on it and see how things go.

Last night, I took this video, but today it got a lot worse. Her legs were like what you see here, just way more out of control and not able to hold her at all at some points. It took me and Violet to get her sitting back down and then had to hold her down for a while because she was hurting herself as her arms and legs hit things. It takes maybe 10-15 minutes for these types of more severe phases to pass. Then it'll become more mild and go completely away for a bit. During those times, she can walk normally. But then it cycles back around.

We're not sure what is causing this. We suspect the Lexapro? It all started with a leg twitch. We think it's the same issue that has grown, but there's also the chance it's simply something else altogether. The leg twitch began soon after she was hospitalized and before any of the GI medications were started (other than the laxatives, so no Reglan or Erythromycin then). I took the video to show the doctor but also to see if any of you have any ideas or have any similar experience you can pull from? I really don't want this to take forever to figure out. It's really exhausting to her and interferes with her ability to function.

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