Early summer morning
It's been a while since I updated. We have all been enjoying our summer so far. It's been nice to just be able to relax in the morning without having to get all the girls ready right away for school. Our days usually consist of lazing around till about 10:00am. After that we will sometimes go to the pool, or to the park, or just outside to play out in the yard. Mary has been in baseball and that's usually three times a week, but it's almost over. Today is the last game of the season, and then comes play offs. Our coach is confident that we will be in the playoffs, so maybe a few more games after today. It's going to be miserable out there today, I think we'll need to stay in for the day, until baseball. It's supposed to hit 96 degrees with high humidity today, OUCH! I don't envy Mary having to go out and play in this. The little ones are staying with my neighbor tonight, so they'll be fine, but poor Mary!
Yesterday we had to drive down to Children's in the morning for labs. This will make the fourth time in two weeks. Anna has been going often because of the weaning of her immune suppressant medicine It has been fine for a couple months, but early last week when we went the level came back really low, so they had to up the dose and draw again in a few days. Then that level came back low again, so they upped the dose, and draw again. Now she is on double what she was on before, because when they called me yesterday her level was still low, and they had to increase again. Hopefully this will be it, but we do have to go back again next week for another blood draw. Keep your fingers crossed that this will be it. I was a little worried because we haven't had to change her dose in year, we just took her bedtime dose away for the weaning process, and then the level of her med in her blood was supposed to be half that it was before we took that one dose away. I hope I'm making sense here. All of her liver numbers are perfect, so it's encouraging that with the level of immune supressants in her blood being so low, everything is still working as it should, no rejection! I think she would be able to handle being off of it all together, but I'm no doctor. Anyway, not fun, but Anna actually doesn't mind. She loves going to children's, she likes the attention she gets form everyone, the McDonald's, the lobby, and best of all the gift shop (she calls it the candy shop). Last week when we went to Childrens, we went to visit a liver friend, Natalie, that is in the hospital with complications from her transplant. Anna wanted to get her something from the gift shop, and headed right to the candy section for her. I usually only let Anna get one piece of candy when we go because otherwise we would have too many stuffed animals, and I would be broke! She then spotted a pink poodle that is just like one that she has (from the same gift shop) for Natalie. I was shocked to see that she didn't ask to get something for herself, and she wasn't upset that we were getting something for someone else, and not for her. What a big girl!
We are all also looking forward to Anna's Make a wish trip to Disney World this August! Anna tells everyone about it. Everyday she has been asking "how long until we go to Disney World?" Poor thing doesn't really have a good concept of time, when I tell her two more months, she has no idea what I'm talking about. So, what I did was make a countdown chain for her. We got some colored construction paper and cut out strips of paper, and staple them to resemble a chain link, then linked them all together. As the base I made a Mickey head to represent the day off the trip. Each day she rips off one link. Clever girl, the first day she had a brilliant idea, she would rip them all off, then we would get to go right away! I explained to her that that wouldn't do her any good, but each day that she rips off a chain it gets closer to the day of the trip. She is already excited that the chain is getting smaller, and I am trying to keep these girls busy this summer so the time might go by faster for them. Or, maybe I should just let them keep me busy, I might be just as excited and anxious as they are.
