Here's a link to a news story about a family in Grand Rapids, the Friars, whose two little boys have DMD. I have talked to this mom a couple times. http://www.fox17online.com/videobeta/watch/?watch=9168ed45-a43a-4b78-8e47-cd6f480fcb08&src=front
We were going to meet her and the kids tomorrow because we were supposed to have a genetics appointment and then later in the day a neuro appointment, but those are both on hold because the blood work isn't done yet. We're just waiting on the genetic test that are being done at Emory University-she said it could be 3-4 more weeks on top of the 4 weeks it's been already. I guess they wait for a bunch of them to come in so they can do them all at once or something? It's frustrating, but 3 more weeks won't be too terrible.
Tuesday, July 28, 2009
Sunday, July 26, 2009
She just cracks me up
Anna is just so funny lately (when she's not whining!) We were going to go to the musical fountain in Grand Haven and Chappie called it a "magical hill." Well they thought about it all day and wanted to know what it was, so he asked them what they THOUGHT it was and Anna said, "Do ponies come?" That was her idea of a magical hill-ponies would come and then she would ride them.
Also-the day before yesterday, she said something about a "ha-luau." I asked her what that was and she said, "you know, a party at the beach!" Ohh, and LUAU.
Also-the day before yesterday, she said something about a "ha-luau." I asked her what that was and she said, "you know, a party at the beach!" Ohh, and LUAU.
Thursday, July 23, 2009
I love this picture
It's from our neice Lauren's wedding, Anna was the flower girl (if you click on it you can see it bigger).
"sturdy tricks"
We were playing Uno and Seth kept giving Anna draw twos so she got upset and said that Seth was doing "sturdy tricks" to her. I tried not to laugh because she was really sad, complete with the big, fat tears, but I had to giggle.
Saturday, July 11, 2009
Bone scan and head staples
Seth had a bone density test a couple weeks ago-it showed he has osteopenia, which means his bones are weak, but it's not as advanced as osteoporosis. It's measured by a z-score, and his was -1.5, so they're not super fragile or anything, but still something we'll have to keep an eye on. Especially once he starts the deflazacort, because that can cause osteoporosis as well. Dr. Chadehumbe already did some blood work on his vitamin D levels, I haven't yet seen what the results of that were, but I'm sure she'll be putting him on some supplements to help his bones. Then she has his levels checked and bone scans done periodically, too. A lot of DMD boys have bone weakness-in fact, I was talking to a mom last week, and that's how her son was diagnosed-he kept breaking bones, which led to the eventual diagnosis.
As for the head staples...I wasn't there (and Chappie wasn't in the room) so we're just going on what Seth has told us, but he was at physical therapy and she was having him do some activity that involved him standing on a balance board and then they had to do something with a ball on a string and they each had some thing they had to open and close, so she wasn't standing right next to him and he lost his balance and fell back and hit the back 0f his head on a table. He went to the ER and they put 5 staples in it. That was a little traumatic, but it's not bothering him at all now, and he'll be able to get them out in ten days. I asked him if he wanted to see them and he said no.
I understand accidents happen, but how could she not know the kid doesn't have good balance? If you did five minutes of research on the disease, especially if you wanted to know how that would affect how you treated him, you would know that these kids don't have great balance. You would think you would want to practice on the balance board a few times rather than leaving him on it alone at his third session. PLUS, nobody called from that office to see how he was doing, or apologize, or anything. I know that they can just go on the hospital system and see what they ended up doing at the ER, but somebody still should have called. Don't you think? Are they so worried about a lawsuit that the PT can't even call and say she's sorry? Heaven forbid anybody take the blame for anything.
As for the head staples...I wasn't there (and Chappie wasn't in the room) so we're just going on what Seth has told us, but he was at physical therapy and she was having him do some activity that involved him standing on a balance board and then they had to do something with a ball on a string and they each had some thing they had to open and close, so she wasn't standing right next to him and he lost his balance and fell back and hit the back 0f his head on a table. He went to the ER and they put 5 staples in it. That was a little traumatic, but it's not bothering him at all now, and he'll be able to get them out in ten days. I asked him if he wanted to see them and he said no.
I understand accidents happen, but how could she not know the kid doesn't have good balance? If you did five minutes of research on the disease, especially if you wanted to know how that would affect how you treated him, you would know that these kids don't have great balance. You would think you would want to practice on the balance board a few times rather than leaving him on it alone at his third session. PLUS, nobody called from that office to see how he was doing, or apologize, or anything. I know that they can just go on the hospital system and see what they ended up doing at the ER, but somebody still should have called. Don't you think? Are they so worried about a lawsuit that the PT can't even call and say she's sorry? Heaven forbid anybody take the blame for anything.
Friday, July 03, 2009
Some recent pictures
Goofy
More goofies
MICHIGAN'S ADVENTURE!!!
Seth on the carousel at Michigan's Adventure-mad because he didn't realize his frog didn't go up and down.
Anna's horse went up and down, so she's all smiles.
I don't know where they got this basket thingie from but they like to wear it on their heads. It cracks me up every time.
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