5 Days Away...

Gabe, Anna and me playing with our favorite Mac app,
Photo Booth, a few weeks ago. She thought it was hilarious!

I don't have a lot of time to post but wanted to say we ended up in the hospital on Thursday and returned home on Sunday, as most of our Facebooker buds know. Eating was giving poor Anna so much pain. She's mainly on tube feeds right now and hooked up to the pump about 20 hours a day, but until we can increase the volume as she tolerates it, it will be like this for a while.

There's a ton of details wrapped up in the hospital stay but I am too tired to talk about it. Sasha started Anna on a few new medicines and she is so far responding well.

Since we were released, Anna seems more shaky and tremors more than she used to; I am hoping this passes. I can tell she's uncomfortable during the episodes, which seem to last the majority of the day. Yesterday was worse than today, so hopefully it is better yet again tomorrow.

She tolerated her first overnight feed last night - 12 hours long at 30 mL's an hour - with no throwing up or congestion. Perhaps the Elecare is doing it's job. She's getting her Pedialyte right now and this afternoon she'll get more Elecare.

Anna used to do the handwringing associated with Rett when she began her regression... Like when I'd put her in the very same toy area Gabe had at that age and he'd fall over and commando crawl to the toys he wanted to play with, and she'd just sit there and wring her hands and stare at her fingers, and rock back and forth. Since we started ABA and other therapies, she hasn't done it in months. I noticed this morning though, while she was watching her morning dose of Noggin, her hands came together. Then ABA showed up 5 minutes later, and she quit.

I feel like every time Anna takes 1 step forward, 2 steps back, I do too. Hers, of course, is physical. Mine, emotional. Spiritual. A few weeks ago I found myself in what I called The Happy Place. Old "problems" had become new "normals" and we were working together alright. I felt like, "no matter what happens, we're going to be okay." (I still believe this, obviously, but the feeling is a little more fleeting. It becomes harder to hang on to in the moments of anxiety and fear.)

So when she ends up hospitalized, and shaky, and starts having trouble eating Boost, which she loves and is one of the few things she can eat like a champ, I have to adjust my settings. Anna looks more "Rett-like." Anna doesn't pass for a small 2-year old anymore. She holds her hands with her wrists bent, her head hangs to the side, she sometimes drools, she isn't as verbal as in months past.

I want to cry when I see her body change.

But, I can't dwell on the changes and the negatives and the rough patch. I have to look in the eyes of the beautiful girl looking back at me, who loves being caressed and held tight, loves you when you play with her hair and rub her head, who answers "Yes" when I ask if she is excited for Jesus' birthday and "No" when I ask her if she likes my new haircut. While some days, for me, it is hard when I get hung up on her physical limitations and appearance, and I've wiped her mouth for the tenth time in five minutes, you know, "those sorts of things," I see the girl inside and I am no longer sad, because she is hilarious and stubborn, sweet and affectionate.

We have that crazy mother-daughter relationship, where we love each other, annoy each other. Love each other, annoy each other. Love each other.

Anna's back in therapies and getting back into the groove of her schedule here. It's good for her. Good for me. Good for all of us... We're good.