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.

New Nurse

A new nurse started working with C. today, taking the Wednesday/Friday shift that we lost when one of our other nurses resigned. C. just loves it when she gets off the bus to find a nurse waiting for her - she know she will get extra attention.

Getting nursing set up for C. was a long drawn out process. As I neared completion of my masters degree this past year and in anticipation of going back to work full time, we began to panic about finding childcare for C. Her needs are not particularly acute, and the nursing aspect is very easy; just g-tube feedings, medications, monitoring skin breakdown, and doing some range-of-motion. But it is impossible to find 'regular' child care to take her. We had been on waiting lists for all the appropriate waiver programs available in Ohio, which is difficult to do since no person or agency tells you the same thing. So in February I began calling our case workers and pleading our case. In March we got alerted that a slot had come up on the Home Care Waiver - so we began the paperwork to get her enrolled. She had to have an intake assessment done, after which the intake manager said she was not sure C would qualify since she did not have an 'unstable condition', but that she would try. We waited in limbo for months,and finally as graduation and the end of my summer employment approached, I again began to press our case. In the end, C was granted a slot in the Ohio Home Care Waiver program. Terms of the program are the she must have licensed RN's serving her - not just aides. Then we went through months of registering with agencies and seeking nurses to provide care in our home. Between a friend of HPEmom's, and two nursing agencies, we know have 3 nurses who split the week with C, generally covering her from 2:30 to 6:30 every day (and on school holidays when needed. Now it seems odd to have strangers in the house taking care of C, when we are often sitting right here. But now that things are in place, I feel more confident about accepting full time work. Now if the economy would just help out a bit...