HPEKid's first day of school was yesterday. Went fairly well, although we got no communication letter home at the end of the day. For the first time, neither HPEmom nor I went in to school on the first day. Claire really lit up getting on the bus, but was totally exhausted upon getting home.

Summer went pretty well. She did 5 weeks of CYO Daycamp and 4 weeks of ESY (extended school program). We traveled to Maryland for a week to visit family and hang out at Aunt Sarah's pool.

HPEkid also got a ceiling lift and track system installed in her bed room. The track carries her straight into the bathtub. For the most part HPEkid enjoys the ride, although bathing her is still not an 'easy' thing. Haven't got the nurses used to using the lift regularly, and in truth, we don't use it for all transfers to her chair and bed. Pretty much it is just used for bath time. Still, it is there if we need it.

Following a nutritional analysis in June, HPEKid is now on a more appropriate diet, switching from Pediasure to Jevity. Her endocrinologist was concerned about lack of weight gain over the last year.

The other medical development this summer is that HPEkid's scoliosis has progressed significantly in the past several months. We think it may be the cause of much of her discomfort and refusal to sit up in her chair. Her X-ray from last week is here. So she has been fitted for a back brace which should arrive in Spetemeber. The goal at this point is to prevent the curve of her back (currently at 39 degrees) from getting worse. No surgery at this point, thankfully.

Botox Dangers

Saw this article today about a girl with cerebral palsy who died of pneumonia after receiving botox injections for her spastic muscles. Her parents sued Botox maker, Allergan, saying that an overdose of Botox caused weakened the muscles controlling her breathing. I won't debate the legal decision, although I would tend to agree that the drug manufacturer isn't at fault and so many other factors are at play when you have a fragile kid with CP and pneumonia. It just makes me stop and think. When HPEKid gets her botox injections Dr. S. always warns us to watch for labored breathing and makes it very clear that respiratory problems are a risk. With this article however, I am surely going to verify the dose that C. is receiving. Anything over 8 units per kilo of body weight is considered an overdose by the manufacturer. We've been feeling lately that C's botox seems to be wearing off more quickly and have less effect on her tight muscles (she gets Botox in her pectorals and biceps), and have been wondering if we should/could increase the dose. Complicating things for C., is that she also has the implanted baclofen pump delivering a different muscle relaxing drug to her lower extemeties, and labored breathing is a potential concern with balofen overdose as well.