In not so great news, yesterday she developed what seemed to be an infection around her g-tube. She had all this greenish-yellowish stuff oozing from the edges of the incision and the skin turned red and itchy an inch or two out. I could not for the life of me get in touch with Dr. B (the surgeon) so around two o'clock I finally decided to pack her up and head for the ER. And we were home in time for dinner. It turns out it was a minor infection and it's already clearing up. She's on a antibiotic through the tube and I also have an antibiotic ointment and instructions to reapply dressings three times a day to keep the incision clean and healing. As far as I can tell, the incision infection is annoying and a little bit itchy and sore, but not really a big deal. Mostly what we're dealing with is overzealous granulation tissue. I wish I could show y'all pictures of her sitting on the floor this morning, hooked up to a feed and doing a puzzle while watching Doc McStuffins and singing The Wheels on the Bus. My multitasking superstar.
In other news, some people have commented on how little my mom posts to the blog anymore. Now that I am taking care of Maisie full-time (I never mentioned it, I don't think, but when Maisie was discharged from the hospital as a baby, she and I lived with my mom, and Grandma was mostly in charge of Maisie's care. The reason for this was the side affects of drugs I was on to deal with the pyschological aftermath of the attack. I was taking anti-nausea pills, anti-depressants, and mood stabilizers, and my memory was affected. I was too loopy and forgetful to be entrusted with the care of a sick baby. We moved out into our own house nearby when Maisie was almost two) I know more about her than anybody else. This blog was always my idea, and when she started it she was just transcribing diary entries that she had written during the first few years of Maisie's life. All this new information has to come through me, so unless I can't post for whatever reason, it makes sense that I do most of the writing. Also, my dad is sick. He's always (and by always I mean since his fifties) had issues with his eyes, cataracts and stuff, but recently he developed an eye infection that is being rather troublesome. So Mom is otherwise occupied.
I've also been asked a lot what kind of therapy Maisie is in. She is no longer in Early Intervention but continues to work through her hypotonia issues (or try to) in private physical therapy sessions where she does strengthening exercises that might not seem like exercises at all to you. For instance, one of the things she has to do is kneel on all fours on an inflated surface (like a pool raft). It doesn't sound hard, but it's really, really difficult for her sometimes. On strong days she also rocks back and forth or goes from child's pose to all fours over and over again. Sometimes she just practices getting up from sitting to standing back to sitting. Sometimes she rolls around on the floor. There are days where it's a real challenge to walk along a hilly floor mat and climb around this foam-slide-sleps-ladder thing, which we have in the den. It depends on where she is physically. She swings from running and jumping to needing to propped up on the couch within twenty-four hours. We still don't really know why, but we do know it's getting worse. Most of the time she wears leg braces like these. Actually, looking at this picture (which is of Mabel Larson -- check out her story) I'm realizing that Maisie looks a lot like Mabel here. In this picture, Mabel is only about two years old, and a small, hypotonic two years old, and Maisie is four. But this is what she looks like. She has more hair, and she is probably a little taller, but this is what she looks like. This is how little she is. She's not growing up into a little girl, she's still such a baby. It's scary.
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