We are on Spring Break this week, but stayed home this year. I was looking for something that the kids could do together, and get outside. We started Letterboxing! If you don't know what letterboxing is, it basically is following clues to find a hidden box/bag that contains a stamp and stamp book. We had crazy weather on Monday, so I let them print off clues for several letterboxes in our area, put them in a notebook, pick a family name and choose a rubber stamp to leave in the stamp books in…See More
We are a family of 6; Allison & Whalen, Blake (14, DMD), Jackson (10), Lauren (8) and Ansley (6). We also have 2 dogs - Aubrey, a yellow lab mix who is a rescue dog (she is SO sweet) and Finn, a beautiful black lab/golden retriever that Blake received from Canine Assistants the summer of '08.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
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Allison, this is funny. I was just over at Traci's page to leave her a note and saw yours! I met Traci and Scott at the lab so maybe I DID see you! We spent a few minutes talking and then they took Gabe in for his bloodwork. How long have you been going to Cincinnati?
I don't know if we saw you or not Allison. It was a whirlwind few days for us. This was our first visit to cincinnati and I am very pleased. Ben will be starting Deflazacort in about 4 weeks. I would really love to spend about 3 days catching up on stuff around the house and SLEEP!
I'm Laurie and we will be out to see Dr. Wong at the same time as you. We are travelling from Buffalo, NY and it's not definite where we will be staying at this point, but I do hope that we can meet up with you while there.
Hi Allison! Was wonderful to see you and Whalen at Disney. Will you be coming to G'ville for the MRI study anymore? Max finished the study a couple of months ago. What is the name of the chair that you have for Blake?
I do remember you guys from Disney! We saw Dr. Wong in April and loved her. She is wonderful and gives so much hope. Winder is about 45 minutes from Atlanta and 20 minutes from Athens. Thanks for the reply on insurance. We have not "officially" been turned down by either insurance company but both have basically said that it is pointless to even try to go out of state. I am not going to give up. What insurance do you have and how did you get them to cover Dr. Wong?
Hi. I am trying to make some connections in the Atlanta area with other mothers/families with sons with DMD. My son Nixon is 10 and like Alisha's son, he has a hard time keeping friends. Nixon is also a sweet, handsome boy.
Hi, I was just reaching out, trying to find other mothers with a son that has DMD in my area. My son Brandon is 12, and has a hard time attracting friends....only because of his disability. This child is the sweetest little boy. Wondering if you got together with any other moms in the area that had children with DMD. Would love to introduce Brandon to new friends that he could relate with.
I don't remember exactly how much therapy it took, but I do remember that he worked really hard to walk again. He broke his leg mid-September, had the casts on for 6 weeks and I know that he was walking by Christmas. He had some therapy, we were able to borrow a walker but I think the most important thing was his attitude and determination. I can still picture the day he greeted my husband home from work by walking across the room all by himself, Jon had a really big grin on his face and my husband just fell to the floor crying. If only he was that determined about doing his stretches :)
This was the point that we decided he should start using a wheelchair for school. He had broken his arm 6 months before, both falls at school, both were just buckle fractures and were nobodies fault, they just happened. We were really unsure about when we were going to have to order his first chair, I guess it was easier since circumstances help make it clear it was time.