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.

New School Year

So yesterday was the first day of school for the new year.
Technically C. is in 7th grade and attends our town's middle school. C. seems happy to be back; she is a girl who likes her schedule, and summer is a bit disjointed with a few weeks of camp, a few weeks of vacation, a few weeks of staying home with Dad and/or her nurses. Of course sleeping in until 9AM or later was nice. Here is the new school routine:
5:30am 1st alarm, I get up and feed her breakfast: pediasure via g-tube. Then I go back to bed.
6:15am 2nd alarm goes off. This time I am up for good. Time to start waking C. Roll her over onto back and check diaper (usually dry in the AM). Prepare AM medications. Get clothes ready. After C has had a few minutes to get used to the idea of waking up, I begin getting her dressed and up into her wheelchair.
By 6:30/6:40am she's usually out in the living room, watching TV. We give her AM meds, perhaps a little more formula. Start putting on her AFO's.
6:50am and we're waiting for the bus. Supposed to come at 6:55, but these first two days it has been about 10 minutes later and I'm not complaining; extra time is good.
Then C is off to school for the day. More on her School routine later. She returns home around 2:45pm. If I'm not working, I am often here, but generally her nurse meets and retrieves her from the bus. They usually go for a walk in the neighborhood, although C has been so tired these first few days, the nurse has been taking her straight to her room for a little rest. She chills out to a movie or music for a while before going on their walk. Sister L, starting 2nd grade this year, is home around 4:00pm and generally either HPEmom or I are home by then.
So far, so good. No vomitting at school or at home, just the usual gagginess and congestion.

Today

We overslept by a few minutes this morning, which is only a problem because C has to be ready for the school bus to arrive before 7AM. That is so @#$%ing early! We generally cut it pretty close, so losing a few minutes can be a big deal. It takes C a few minutes to wake up and become alert. Also she quite gaggy first thing in the morning, and while she rarely vomits it is always a danger. We generally do not have to change her diaper because lately C has been dry upon waking - she generally voids later in the morning (this is the only time in the day when her toileting is predictable). But still, getting dressed, giving meds, getting into AFO's and bundled up into coats and gloves and into her wheelchair all takes time. At any rate, we made it on time this morning.

After school, C enjoyed her afternoon with Nurse Peggy. We sent the nurse home early because of heavy snow. Then towards dinner time, C began to cough a lot, with moist, juicy coughs. We put her in bed with a DVD to settle. At bed time, I rolled her on her back to change clothes, which set off a round of gagging and coughing, and she brought up a wad of phlegm. As I sat her up at the edge of the bed, I could tell she was going to lose it: and she did. This is one of C's most regular problems: nearly any irritation can bring on vomitting. It usually starts with a simple gag or cough and ends with a full vomit after which she generally feels much better. I checked her log: today was the first vomit since Dec. 31. For C, once in 2 weeks is not bad.