Yesterday we started giving Maria Artane, which is similar to Baclofen; both are for muscle spasms, but Artane interferes less with seizures (Baclofen lowers your seizure threshold). Haven’t noticed any changes yet. But if there are any improvements, we should notice them soon. So now in the mornings she takes 4 meds (4ml, 2.5 ml, 2.5 ml, and 2 ml) and in the evenings we add fish oil, so that’s the 4 meds + 3ml — that’s a lot of syringes!! (We’re still using the ReliaDose to give her her medicine. I still think it’s the best invention ever. I heard the manufacturer wasn’t making them anymore, so I’ve been buying them like crazy on eBay!)
Maria’s still doing well at school. Only slept once in the 8 days she’s been there. I went to the school and had lunch with her yesterday. Gives me a chance to chat with her paraprofessional. I met the afternoon para, but only talked for a minute. She’s wearing her AFOs all day and her vest (TLSO) from 8:30am to 12:30pm or so. I told them to keep it on as long as she’s comfortable, eventually working up to having it on all day.
Friday we’re going to look at some wheelchairs. It’s been 2 1/2 months since our first visit; I thought it was all worked out. I should just call the guy with all my questions, but I’m a better emailer. He’s not so much–drives me crazy not to get answers to all my questions. I’m sure it’ll all be clear Friday — like what are the next steps, how long should this take, what else do I need to do, and most importantly, when do I need to get a van. Rosanne asked me if I was going to keep my car. I hadn’t even considered doing that, but since it’s paid off, I just might do that. That way, the van will always be here to transport Maria, we won’t have to worry about whether Manolis or I should be driving it for the day. We’ll just have to juggle the cars on the driveway, the street, and the garage.
And since we’ve had more than 2 or 3 calm days in a row, something had to happen. My belly button incision is infected. It’s been hurting for a while, getting worse by the day. Last night I had myself pretty worked up. Today I spent quite a bit of time on the phone trying to get an appointment; finally got one for tomorrow morning. The redness around my belly button is getting larger, so I traced around it with a pen to see if it gets any bigger tonight. It really hurts. And it looks pretty bad. I’m actually fairly concerned about it, but probably a course of antibiotics and it’ll be ok. I just hope they don’t have to open me up again…. It seems to have given me the dropsies — I dropped 3 glasses of water today. THREE! I never drop glasses of water. Annoying!