Sleepy Summer Days

The first week of Summer school is ending. Maggie is exhausted. She slept for three hours yesterday afternoon. This new schedule is knocking her for a loop. The bus comes a full hour earlier than it did in the regular school year. She has to be downstairs and ready to go by 7:20AM. That means she does not have that extra bit of sleep she used to get before the wild morning routine starts. Now it starts at 6:00AM instead of 7:00AM. The night nurse has her dressed for school when I come down and we have arranged her schedule so that she’s fed and catheterized at 6:30. That is less stuff that I have to do, which is great for me. I still have to fill the oxygen tank, program the computer (if I did not do it the night before) get the suction machine, tray, pole supplies etc. It used to be that Maggie was resting while I did all that. If she was not asleep, she was laying down quietly watching me bustle about. Now I am doing that while the nurse is finishing Maggie’s care. No rest for the wicked, I guess.
Summer school is a bit of a joke. According to the nurse, they are working on puzzles a lot. It really does not matter to me because this is her only opportunity to socialize. No one is programming her communication device except me because the summer school teacher is not an AAC specialist. Programming it is easy, but it takes a few minutes or dedicated concentration. You have to want to do it and even if she wants to, I doubt the woman has an extra 30 seconds in her day. Therefore, Maggie goes to school with her “news from home” programmed in and comes home with the same thing I put on in the morning. It does not matter. It is a good review for me. I have decided to make it a mental exercise to repeat my own words verbatim; maybe it will help stave off Alzheimer’s. (Sometimes you REALLY have to look for the silver lining)
The school day is short, 8:00AM to Noon. Maggie is home by 12:30. Because she is so tired, we have not done much in the afternoons. She just listens to stories and music. She will adjust, however, and I have to come up with some entertainment. Summer school will end July 24 (I think) and by that time she will be raring to go at 6:30 AM and we will have a whole day stretched out before us.
I need to come up with a schedule. It may sound ridiculous, but if I plan to be on the go by 9:ooAM every morning and back here by noon or so, she will have the most fun. She is a morning girl and we have to arrange outings around all her medical procedures. (I do not mind feeding her in public and do so all the time, but the catheter situation…, not so much) It is too easy to let the morning slip by and not get out. Once the nurse is here I have to tend to my stuff, so I need to make sure we are up and out early.
We are just a couple of blocks from the museum and the Academy of Sciences, which are both enjoyable. A morning at the zoo is a must and trips downtown to dad’s office, and shopping at Union Square, dog walks at Crissy Field or in Golden Gate Park, and maybe even a road trip or two to visit cousins in the North Bay. We will be girls on the go in August.
Now I am tired.