Weekend update

Good thing we gained an hour this weekend, because we were busy!

Any change in the schedule causes a ripple effect. When the whole country shifts back an hour it takes several days for us to catch up. Add in our busy weekend and forget about it! Maggie fell asleep an hour early last night and by the time the nurse arrived at 11 all of us were sound asleep in the living room.

My posting has been slow of late. We have been very busy entertaining Betty and Vanya. In fact I think I'm using the extra hour to write this. On Friday night we went out for Chinese food, Saturday we went to the Legion of Honor to see the Pisarro exhibit, they toured Fort Point and then we had a picnic at Crissy Field. The rain was threatening all day, but held off

Yesterday we went to Ghiradelli Square. We felt it was out obligation to show our guests the Chocolate factory, or the remnants of it.  We hadn't been there is a very long time. I remembered why when we arrived. It its the LEAST accessible place in San Francisco. Multiple levels with one elevator that  comes four steps above ground level - WHAT??!?!?!.You have to call a security guard to unlock a lift to get up those stairs to get to the elevator that takes you to a bunch of shops that cannot fit a wheelchair. Even in the chocolate factory itself you could not maneuver with a chair. I'm sure they don't get many in there, but I can tell you there's a reason for that. All in all a colossal fail.

We wandered around Fisherman's wharf and stopped in at Cost Plus. It's always important to take visitors to our city to a store that specializes in imports from around the world, including Germany. Oops. Still they had fun.

Maggie loves to use her dynavox to say hello to each of them and they have become very adept at responding, even when she says hello 20 times. Maggie has them well trained.

It is hard to believe they will be leaving us in a couple of days and things will go back to "normal." There are still so many sites I want to see!

P.S. I forgot my gratitude for today. I am thankful that this experience has been so positive - but I am also thankful that tomorrow is election day and all the phone calls and junk mail will stop for a while.  If you are in SF., don't forget to vote tomorrow.

Fall Back

What is all the talk about the summer solstice being the longest day. Bah!. The longest day was yesterday, the day the clocks go back. And of course that’s the day the nurse cancels. So, we had a long day together. It was fine, there was nothing scheduled. We just had to entertain and care for Maggie.

That should be no big deal. After all the excitement of Halloween, she was wiped out on Saturday. It poured rain here and she just stayed in. After a day in the house there was no way she was going to stand for a lazy day around the house.

We headed to the new Academy of Sciences again. It’s only six or seven blocks from here. The rain was gone yesterday, so we hoofed on over there. Last week was so ridiculously crowded we stayed for only a couple of minutes. This time we took advantage of the first “members only” hour. Or at least 15 minutes of it. (We were a little slow getting going). Once there we ran into Maggie’s speech therapist/augmentative communication specialist and her kids. That was great fun. Maggie always has more fun with other kids around. The tunnel of fish and the Cave of eels were particularly enjoyable. The Cave was just large enough to fit her wheelchair, both height and width. Steve pushed her through on his knees. Once inside, even Steve (6’4”) could stand up to view the eels.

We are on a short leash when we go out because Maggie needs various procedures done every three hours. She also needs tube feeding every two hours. The feedings I will do anywhere, the other stuff, not so much. We have to be home or somewhere private, accessible and convenient to do the required procedures. We came home and took care of all the necessary matters. However, it was still only 1:00PM. There was a lot of day left. If we didn't find somethign else to do Maggie would start her new favorite trick.

Maggie has developed this behavior of pulling out her trach to get attention. It is not good. It is frustrating and exhausting. She does it over and over again. You have either to hold her left hand down, or put on a “glove” that prevents her from getting at it. Of course, she can easily pull off the glove, so it is a never-ending struggle. We have tried getting angry, frustrated, acting disappointed and everything else. What she wants is attention and she gets it no matter what we do. Hence, she is rewarded for this behaior. We cannot ignore it because she will pull it right out. We needed more activity.

Steve needed to get some work done so we headed downtown. He went to his office and Maggie and I shopped in downtown San Francisco. It is a shopping Mecca. I know times are hard, but you sure would not have known from the crush of people downtown. It was invigorating and fun. Maggie kicked off her shoe as I was pushing her across Market Street, but fortunately, I saw it and retrieved it before it was run over by a streetcar.

Back home for the next round of procedures and then Maggie helped me cook dinner. She threw dishtowels and anything she could reach out of the drawers. I was exhausted. She was not. We finally sat down to dinner and she was bored. She succeeded in pulling the damn trach out just as we were finishing dinner. We jumped into action, cut the ties, re-inserted it and re tied it.

This is not my idea of a relaxing day. We definitely had fun, but the pressure to keep Maggie from pulling out her trach took so much energy, and then she did it anyway. Not sure what we are going to do about this going forward. It seems to be something Maggie just does at home, and 75% of the time just when I am home. Isn’t that special? It’s a little something just for me.
I was extremely happy to see the night nurse arrive. Waking up today in the light was so much easier than last week. In addition, it’s Monday. And my sweet daughter goes back to school. Whoo hoo!