Avengers on Hold

Tomorrow is the last day of school.

Sigh.

I remember a time when I looked forward to that. Not anymore. It means it's time for Camp Mom once again. Maggie and I have two weeks before summer school begins and we will have to start hitting the City's hot spots once again. I am tired already.

Though the academic year started off with Maggie fighting to keep her stamina up, it quickly improved and so did her health. In the beginning we were trying to convince Mr. G, her new teacher, that she wasn't really like this. I don't think he believed us. Finally around Halloween Maggie woke up and became her old self again. Then she flew through the rest of the year. All in all, her healthiest year in a very long time. One night in the hospital in November for a procedure and that's it. Hopefully we can repeat that next year.

First, though there is summer school to contend with. This is the first year in several that Maggie's regular teacher is staying to do summer school. It's great. It is so hard with all the transitions; having consistency is important. last year it was a new school and a new teacher, but the nurse and the staff were the same. This year she still has to go to a different school but there will be the same kids and the same teacher, nurse and staff.

Or so we thought. New school? yes. Same teacher? yes. Same nurse? yes. Same staff? NOOOOOOO!

It was just revealed this week that the paras (para professionals or teacher aides) in her class are not getting assigned to her classroom for the summer. Apparently they aren't being assigned anywhere because they are not senior enough and there are so few para positions in the summer. That is confusing because they all had jobs last year and they were less senior then.

There are three aides in her class, Ms. Eva, Ms. Laura and Mr. David,  and they are incredible. I feel terrible that they are being left out in the cold - and not just because I'm such a kind person. Oh no. I have selfish motivations as well. It is a lot safer for the kids if there are people around who know how to move them. These three actually know how to communicate with Maggie and with her classmates. They know and can program the communication devices and they know the kids. Each of these kids requires total care which means lifting, re-positioning and diapering several times a day. Seniority may not be that helpful for some of those skills. Transition to summer school things could have been seamless, but that would have been too easy. I've written to the powers that be pleading for some sanity, and asking for the kids safety to be considered, but I don't know what good it did..

I feel a little bit sorry for whatever more senior para gets assigned to this classroom if they don't know what they are getting into. It is not for the feint of heart. They may go running from the room.

We shall see what happens.  These three are like the Avengers, doing jobs very few can and I have a feeling one or more  may be called into action.

Hope so.

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Pictures: Maggie and Mr. David both wearing horse head shirts on the same day - by coincidence! Steve and Maggie with Ms. Laura, Nurse Janice and Ms. Eva at special olympics last week. Too bad Steve couldn't be a little taller here.

Sleepus Interruptus

I have been staring into space all morning. You have to love a Tuesday that starts with a broken trach at 4AM. Yeah!


I heard the nurse calling me but it took me a few minutes to realize it was real and not part of my dream. I hopped out of bed and headed for the stairs. After a couple of steps, I turned around to pick up my glasses. At that point, I was not sure what the problem was, but whatever it was, I was going to have to be able to see. Trying to focus my eyes at 4AM is difficult, especially considering I cannot see much without glasses even when wide awake.

Happily, when I arrived at her bed, Maggie was not in any distress. The nurse was standing at her side when it broke and kept it in place until I came down. We have an emergency kit and making the change is quick. I was back in bed in 15 minutes, but never really went back to sleep. Even though I knew Maggie was fine, it is difficult to settle back down once the adrenaline is pumping, and being roused out of a dead sleep to deal with a broken trach definitely gets the adrenaline pumping.

I just stayed in bed watching the clock and thinking about all the balls we have in the air. Some are just the everyday worries but others are more significant. For example, there is still no word on when they will do Maggie’s surgery. I talked to two of the three specialists involved and have an appointment with the surgeon next Wednesday. Originally I was worried that Maggie would miss her prom, but the prom is on Friday so that, obviously, is not an issue. Given the lack of urgency from the specialists, I am now going to push to wait another couple of weeks until school is out. Many kids yearn for summer vacation, but that is not a great time for Maggie. She LOVES going to school; it is really her entire social life. There is one week between the end of the academic school year and the beginning of summer school. Maggie will likely be out of commission more than one week, but it might as well encompass that week off.

The alarm rang at 6:30 and I got up and started the wild routine to get Maggie onto the bus. Since she left I have been "vegging out" in the front room. I am tired and worn out, but not sleepy, probably because of the three strong cups of coffee. But that will wear off so it is time for me to hop into the shower and carpe diem.

I have to hurry so I can still get in that nap this afternoon.

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.

Lazy Hazy Crazy Days of Summer

The last day of school was Tuesday June 9. Before I could even worry about the long summer stretching out in front of me, summer school started.

Yep, it started this morning and lasts for five weeks. The day is shorter and starts earlier than the regular year, so we have to adjust. The school bus will arrive at 7:24AM, a full hour earlier than the regular year and Maggie will return home at 12:30. I drove her this morning because of all the supplies we had to transfer from the old site. I left her with her familiar and wonderful nurse and with all the same classmates as the regular school year. It is in a different place with a different teacher and aides, but there is enough familiar that I am not too worried about her.

When I came home, Steve asked if Maggie was scared. I said no. The only one who looked scared was the teacher. She had four nonverbal kids in wheelchairs and was clearly overwhelmed as she walked into the classroom with a basket full of breakfast items. It did not help when the nurse said only two of the kids eat. The teacher said quizzically, “I beg your pardon.” And the nurse advised that two of them have g-tubes. (Gastrostomy or feeding tubes for those of you not familiar with the lingo). Breakfast was the first activity of the day and two of the four could not participate. The next activity was to make pudding, but Maggie cannot even touch that stuff or she gets terrible hives. The nurse knows all that so Maggie is safe. The teacher looked stricken and I took that as a sign to leave. The last thing that poor woman needed was a parent making judgments. The teacher will be great I’m sure, but it may take a few days to get the “deer in the headlights” look off her face.

Summer school is chaotic on the best day, and day 1 is a joke. Maggie did fine, but for the first time ever she used her communication device to tell her nurse she wanted to go home. This was at 11:00AM, an hour before the day ended. Maggie came home and crashed. She’s been sleeping for an hour already. Anytime she has a new situation she handles it fine while she’s there and then just shots down to recharge.

It’s a good game plan.

Unrelated: Steve and I went up to the Marin Headlands on Saturday. It was a gorgeous day and we acted like tourists, even though this spot is probably less than 6 miles from my house. How about that view!