Thanks for reaching out and connecting with me. I'm terribly sorry about your son's diagnosis. I know how you feel. James was diagnosed a week after his 6th birthday...my world came crashing down....he just turned 9. He is doing well and is still walking. Loves to ride his bike and play with his 5 year old sister but tires easily because he does tooo much. Everyday is quite challenging both physically and mentally on all of us. Once a week he does water therapy and hippotherapy and once a month we see the PT. Please reach out whenever you need anything or just to talk. Please keep in touch.
Thank for the heads up about the 2ND grader in your area. I only use words that the mother tells me to use. Some say sick muscles, Duchenne, MD, etc. I do not share any thing with the boys that their parent hasn't already told them. If you might pass my information along; I would welcome a call if they are intrested.I am very careful not to share any info with the boys. I need only one more participant to complete the data collecting! Thanks for your intrest Donna.
Donna, The age group is 8-12. Darn it. What I ask the boys is to tell a story about what it is like to be them. And to name any emotions they have in the picture. im careful to ask before hand so I use the same language as the parent. If you know of any other moms of boys 8 to 12. Mind passing along my info?
Thank you so much for your intrest. When can I come up? If you want I can email you information for participation. I can come to your home or meet in a local place. Such as a library.I have done both.Whatever the child and mom feel most comfortable with. I ask your sone to draw a picture and tellme a story about it. Average time is 1 hour. When would it be a good time for you? If on the weekend my husband and I can make an overnight of it. Thanks so much Donna!
We've just recieved the deflazacort in the mail today. Thanks for all your help on where to get it and who to contact.And yes the price is reasonable.I just hope he swallows the pills without complaining now!
Hi Donna! Thanks for your comment on my page. We, like you, like so many people here, were totally floored by Seth's diagnosis, too. But we're getting through it. Seth has a point mutation, too-I know the 2b trial is closed, which is a little frustrating, but I was reading that they may be able to forego a third phase and submit 2b to the FDA? Fingers crossed! I hope your son (he is so cute!) is doing well on the PTC. Take care!
I hope you are all doing well. It was nice to meet you at the support group in Davenport! We are all soooo excited for nice weather! It gets us all out and we look forward to swimming in our pool! Hope Kyle is doing good and all your kids are keeping healthy. Seems our school has lots of illnesses going on right now, so we're hopeful we can get through with out too much!!! Always know we are only a phone call or e-mail away! If you ever look for accommodations, down the road, look me up!! But for now.....enjoy all those special moments with all your kiddos~!!!!!
I just wanted to respond to your blog, since it sounded so familiar to me. My son, Jordan, was just diagnosed at 6 1/2, this past June 16th. Like you, we were astounded that there was something like this wrong with him. At his 6 yr appt I asked his dr. about the way he bounced when he walked, and one thing led to another, and we have this diagnosis. Now that I have it, I can see that Jordan cannot go up the steps normally without holding the railing. He also gets up off the floor a little awkwardly. However, he's always done both things the same way, and I never thought anything of it.
Right now, all Jordan knows is that he goes to PT and gets stretched to help his muscles stay strong, and that his muscles are a little weaker than some people. He knows that we are going to be starting him on "muscle medicine," which I told him I hoped would help him get up the steps a little easier.
We're at about the same place in this journey, I guess. It hasn't really gotten any easier for me. I do find that if I have him out doing all the normal things that we did before that I feel better. Being alone in the house is definitely BAD. I am clinging to faith and I do believe that we are going to be able to keep him well until the drug/cure comes. We are not a candidate for PTC 124, and are still trying to get the deflazacorte (the tip about the MM is very good!). I have no idea what our first shipment will cost, but need to follow up on that this week.
Please feel free to vent to me anytime! We can commiserate over how they can tell us a perfectly happy and healthy boy can have this going on.
Donna, Welcome to PPMD Community. I am sure sorry to hear all that you are going through. I hope to be able to respond to your blog sometime but I hope that putting it all there has helped. It does get easier, the first year or year and a half is the hardest, but then again Jared was just diagnosed on Feb 13 2007.