Hi Polly: I am friends with Julie and she mentions you alot. I live in Pasadena and just wanted to say hello. I have been at the last four PPMD conferences, have you been? Maybe we have met if you have. I see your name a lot! My son is almost 12. Take care,
I was working along and saw your E-Mail and had to stop what I was doing to check it out! I love it "MySpace for PPMD" is right. Perfect. I will have to upload some pic and stuff when I get home later. I will probably give you a call tonight when i am on my way home. Maybe we can get the boys together on Sunday afternoon if you are not busy!
Mark is doing fairly wel lin school. He struggles a bit with grammar concepts but otherwise, is far exceeding any expectations I had of him doing in first grade. We hired a reading tutor for him when he turned 5 years old. We had learned that some boys with DMD have a reading delay so we wanted to be proactive in this area. I think this has helped him become the " right on target" reader he is today. Still, we visit with his tutor every Saturday at the library. He is doing so well, I am afraid of stopping the sessions with her.
He is 7 years old and becoming more aware of his weaknesses. He sits back now and watches the younger and "healthier kids" perform the physical activities that he struggles with. This happened to us on Sunday when we took the kids to the park. A 2 year-old walked right up next to him and climbed a roped wall a few feet without any difficulties. I watched him stand back and watch this youngr kid perform this task. Yet, he said nothing. I could only imagine what he must have been thinking. So, I know the wheels are turning, just not to what extent.
We have him on several supplements. I think they give him more energy and questionable some help in strength. He has been on prednisone since he was 3 1/2 years old. He also is putting on some weight and doesn't care for his food restrictions too much. He wants to know why he can't eat the "junk" his friends get to eat.
He remains ambulatory but tires with long distances so we use a more mature looking stroller for him. He is able to do steps without any difficulties at the moment.
He loves Star Wars, Indiana Jones, just learned to ride a ATV independently, and loves the rides at the amusement parks. He hates that he is not 48' tall since this was the height restriction for a few of the rides he wanted to get on but couldn't last week. :)
He is quite the chatty little boy. People who don't know him look at him and say he is quite articulate for such a little boy ( they think he is 4 or 5 years since he is of small stature). On Saturday, a stranger walked up to me and said, "What a cute little boy, How old is he...4, 5?" I said, no, he is 7. She said, "well, we all made differently" ( which is what I preach to my son continuously). She then said, "he is so muscular" ( he was wearing his muscle t-shirt). " I think he is going to be a football player." Ugh! He didn't say a word. Nor did I.
Well, that is only a fraction about my son, believe it or not. Keep me posted on how life is going out west. You nver know where life will lead us. perhaps I might get to meet you at the PPMD conference one year.