Sick girl

Okay, so the biopsy results came back at 3:00 in the morning and the news is that Maisie has a disease called hemolytic-uremic syndrome. Normally kids get very, very sick with this condition before they are diagnosed. Unfortunately, because Maisie is really sick all the time, we didn't notice her symptoms -- fatigue, diarrhea, pain, fever, seizures, low urine production, etc -- are symptoms she displays constantly. So the minor increase in all these things was not alarming. We are very lucky that she had this checkup, and this is exactly why we have these checkups.

We're going to stay in the hospital for a couple of days so they can keep watch on Maisie. She is going to be off stool softeners, physical therapy, and pain meds for 24 hours so we can see what her symptoms are unaffected by medicine (except for seizure meds, hemodialysis, and her drugs for myasthenia). Then she'll go back on normal medication. Our hope is that this will resolve itself after a few days, but if it doesn't things will complicate quite a bit because everyone reacts differently to the various kinds of antibiotics and stuff that are used to treat it.

Maisie feels okay, mostly because she feels as ill as she always does. She's mostly just really tired and really not happy about the cancellation of physical therapy. Therapy is really hard work for Maisie, but she also really loves it because she loves experimenting with walking and sitting and standing and mobility in general. So there has been lots of struggling to get out of bed and wearing herself out trying to get onto the floor to get some hardcore sitting done and lots of crying when I have to put her back in bed. It is wonderful to see her having so much enthusiasm and excitement to get moving, and just as heartbreaking to have to tell her no.

A lot of people have asked what Maisie's status is mentally,  developmentally, speech-ally, etc. Maisie is not, as far as we can tell, mentally delayed in any way. She struggles with a lot of anger, frustration, and anxiety because she remembers being able to walk and run and talk and now she can't do any of those things with as much grace and efficiency as in the past. Because she has not lost any memory or mental abilities, Maisie is still technically potty trained, but she often is not able to communicate her need to use the bathroom to me quickly enough, and so she wears pull-ups most of the time as a precaution. She has lost a lot of speech because talking using an extraordinary amount of muscles and coordination, which Maisie simply lacks. We're working on it, and in fact she will be starting speech therapy in the fall. For now she communicates much like a 1.5-year-old, in incoherent stuttering phrases and crying. It's hard to watch her go through this. But I am so proud of her and all she has achieved and all she is working towards.