At her neuromuscular rehab appt, it was decided that it's time to cast her for bilateral AFOs. Her achilles' are extremely tight and her little feet are starting to change form (not in a good way). Since she is a long way off from crawling or walking, her AFOs are going to be solid and fixed, their use primarily to give a nice stretch to her legs/ankles/feet and hopefully prevent further tightening. We had a brief discussion about Botox, but we're a ways off from considering that as a potential treatment. Her overall tone, the Doc felt, was a little worse - when I call her my noodle, I'm really not kidding! Good news is her left arm and hand appear to be stable with the Mckie splint she has. Her head throwing, head/chest hitting, face scratching seem to be sensory. M LOVES to be in motion. She loves to swing and be
Lastly, it was EEG time - the most dreaded of all appointments. M cannot stand to have her head touched. She barely tolerates having her hair combed. Attaching all the EEG leads and then subsequently taking them all off is a big ordeal for her (and the poor tech that gets stuck with us). Luckily, she's so worn out after getting them on, she goes right to sleep for the actual test. While we don't have the "official" read on the tracing yet, the techs there are never shy about letting me take a look and comparing to previous tracings. This one looked better than any she's ever had. She had very little disorganization and the tracings were almost....get this....symmetrical! This is HUGE! I have to say that it correlates nicely with her clinically. She's had very few seizures since starting the Tri-Leptal last month. We haven't seen a spasm (knock wood) in several months. She's been more alert, happier, more interactive and sleeping better, too.
I also drew labs on her last week and all is looking perfect!
We're still fighting the insurance to get her Synagis for the season. It's an uphill battle, but little do they know who they're dealing with. Sometimes I get the feeling they try to ignore you long enough in hopes you'll go away. Not happening!!
I got word today that the anterior trunk support vest that was not ordered with her wheelchair is FINALLY in (after FIVE WEEKS). We also lost a couple of very important parts of the chair and those are on order. Next Thursday I'll make the trek to the medical supply place for a re-fitting, "installation" of the vest, and hopefully repair.
I guess this wasn't a very "quick" update after all. That's what's going on with our girl right now.