update

Emma has been having trouble due to her inability to handle feeds (in the last 13 days, she's only had 1 day's worth of feeds), laxatives don't work very well (except for when they do), her movement issues remain but are more mild, and her neurosurgery appointment didn't tell us much (he didn't get the previous scans, like he hoped, to compare current scans to, so he wants to see her again in a few months for more).

PHOTO: She used to love to do arts and crafts, but she hasn't been able to enjoy it like she used to. The movement issues are a problem. Then her strength & energy is another. But, a couple weeks ago, she was able to finally work on some Christmas crafts that were waiting for her (the photo). Then, a couple days ago, she decorated Valentine's cookies. While it's few and far between, it feels good to see her participate in normal things when she can.

(So, assuming I remember, from now on I'll have a summary at the top, for those short on time, and then the full post below.)

movement issues

Emma has all of the same uncontrolled movements as before, but now they're waaaay more mild. Putting them at level 100 before, they're closer to level 10-20 now (if that makes any sense). We noticed a gradual improvement after she came off of the Buspar, but it kind of seems like we've stalled on seeing continued improvement. Not sure if it'll take more time (they say it takes six weeks to get out of the system) or if the Buspar is simply not related to it at all. Sometimes it flares up a bit, but then it calms back down again.

GI

Soooo, due to the topic being what it is, I've noticed a lot of people suffer in silence with this really horrible condition, and I want to try to make what is invisible, more visible. So, I'm going to talk about it in detail, like I have with all of her other conditions. (And with Emma's permission.) I think it's important. Just know that sometimes this might be TMI for you, depending on your personal comfort level.

feeding issues

You know how, after a big holiday meal, you stuff yourself so full that you need to go lie down for a bit until you feel better? While not the exact same, that's what Emma deals with all of the time now, just worse, and to varying degrees. Sometimes it gets really bad. Only, where we can just wait a little bit to feel better, that doesn't happen for her. This intense fullness can last for weeks & so far has always required hospitalization to relieve her of it.

About 13 days ago, it got really bad for her. So, we skipped that feed. She's already on a daily laxative for maintenance. This keeps everything more like oatmeal. Or <insert your favorite soft food here, so you can associate it with this now>. So, when I say she fills up, it's not because her stools are too hard to pass (though, if left untreated, it would become that way). It's more that her intestines just don't seem to move it much, despite having her on a medication 3x a day to help her intestines work.

So, I immediately upped her laxatives to try to help relieve the discomfort as quickly as we could. We've yet to be successful at doing this at home, but now we understand a bit more of what is going on, have the GJ tube, the doctors thought we should be able to. Soon I had her up to 5 laxatives a day, with minimal results. Many days, all she went was once.

Meaning, the goal to empty her out wasn't (isn't) working. Her intestines don't seem to respond like normal to the laxatives right now. We're discovering that sometimes she responds well to a laxative and other times it's like it's almost doing nothing (and it'll be exact same laxatives, too). So, the days keep ticking by, and she keeps not tolerating feeds.

She does take some food by mouth to satisfy the desire to eat and taste things, but it has to be really light, and at most, she can eat about 700 calories, but usually it's probably 400-500 calories. I've tried to negotiate a trade to formula, but she says the formula is very heavy. She can't trade it.

On days 10&11, for no obvious reason, she woke up able to take some feeds and was passing a lot of stool suddenly. It was like her digestive tract decided to work to work that day, but then day 12&13, it went back to sleep. She hasn't been able to handle feeds again. And that's where we sit with things. Out the past 13 days, she's had 1 days worth of feeds, plus whatever she could eat by mouth.

They've had her come in for blood work multiple times to make sure she's properly hydrated (I run water, instead, when she can't handle feeds). They did an x-ray on Tuesday, right after the two good days she had, and she was moderately constipated. The lower part was empty, so they felt like the laxatives were starting to work, which matched up to the two productive days she had. But now we're back to it not working. I don't know what the plan is. I need to email them another update to see.

It's incredibly stressful and incredibly frustrating. She's already gone through so many phases of barely eating that it doesn't seem like we can keep doing this. It doesn't seem like it should be this hard simply feed her, but it is. We have an appointment with GI for the end of March. If this keeps up, that's not soon enough. I know they're considering readmitting her, if needed.

(I have a part 2 to this that covers more the emotional side of things. It was too long to keep them as one post. So, I'll post that later.)

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