Monday, October 26, 2009
Alex has Prader-Willi Syndrome. People with this syndrome are said to have an insatiable appetite and put on weight rapidly. While the rapid weight gain is true, the insatiable appetite is in question. We attended a conference where a study was done and their finding lead them to believe that they do not have an insatiable appetite, merely they are seeking out food because it brings them pleasure. I find this true with many things Alex does. If he likes something, he wants to do again and again and will use the event in his make believe play. For example, church. He loves everything having to do with church. He's obsessed with the Mormon Tab. He plays church with his Little People and every Sunday sits in his room and sings the Hymns. So in the case of food, food definatly brings people pleasure and they seek that out, and because of this we've mistakenly assumed that they have an insatiable appetite. Disclaimer: this is not a theory that is accepted by the PWS Association. This is merely a new theory. But I totally believe it to be true. Besides the research that was done, I have my own proof. On the counter sits eight bananas. Alex will not touch them because they have brown spots on them. He only eats bananas that do not have brown spots. I will not lock those bananas up and I can guarantee they will be there in the morning. Now if Alex was really starving all the time and would eat anything, I would expect him to eat those bananas. But he doesn't and he never has.
Sunday, October 25, 2009
Sunday mornings usually aren't too crazy around our house, well except maybe for today. I was taking my time getting ready for church this morning (we start at 9) because I have the help of the greatest guy ever! Well, at 7 this morning, the hospital calls in him because they are short nurses. So Todd has to leave and I'm left to get the kids ready to go on my own. The girls are pretty good at helping, so that was good. I'll admit, I am not that great at keeping this house together. Somewhere in the mass chaos of my life, Alex's white shirt did not get washed. Of course he doesn't say a word about this to me. He takes his shirt and sticks it in the washer, 15 minutes before we have to leave! So as I'm hollering at everyone to head to the van and asking Alex why he's not dressed, he tells me his shirt is washing. I tell him he's going to have to wear something else, and of course this is not possible. He pulls his shirt out of the washer and puts it in the dryer and I tell him I'm just going to have to leave him and come back later and get him. He's crying now and doesn't like this, but what do you do? I play the organ for Sacrament and by now it's a quarter to nine, fifteen minutes later than I usually leave. So we just leave him. I was thinking the whole way to church that I'll just ask someone else to play. I arrive and no one that I know who can play is there, so I just begin to play prelude. Oh, and I have to say, there's this sister in our ward, Rose, who watches after Seth for me when Todd is not there, and she is such an angel! Seth actually doesn't fuss too much when she has him. With anyone else he just cries the whole time! So I'm playing prelude scanning the audience to see if the three people I know who can play organ are there yet. No one yet and it's getting closer to the start of the meeting. I decide that I'll just play the opening and sacrament hymns and then go get Alex. Today was the Primary Sacrament Program and Alex had a part so I knew I needed to get him for that. The whole time I'm playing I'm also praying that Alex didn't decide to walk as he'd have had to cross a six lane road to get to the church! I was also hoping he wouldn't be too mad not to come to church with me when I went to get him! So after the sacrament hymn, I slip out the door and drive home to get Alex. We live maybe 2 minutes away from the chapel. When I arrive Alex is dressed and waiting! I was so happy I didn't have to fight with him! When we got to the church, Alex wouldn't go into the chapel. He just stood by the back door to the chapel until it was his turn to say his part. I missed Kate's talk at the beginning, but I did get to hear the other three children. It started out crazy, but turned out to be fine! And what's even better is that during Sunday School Todd arrived! They let him come home! It's going to be a great Sunday after all!
There's this guy in our ward who is mentally handicap, I'm not sure what he has, but every time he comes up to me and sees me holding Seth, he always comments on how bright Seth's light is shining! I love that! One angel talking to another!