We are doing ok here now. It took a bit of adjusting to, but I think we are getting there.
Ryan is now on Deflazacort( I think thats how its spelt) He has stopped gaining weight and his balance is heaps better. He has just got off his training wheels with the push bike.
For the time being I have tried to stop looking so far forward and am dealing with today..... Seems the best way forward for me.
Sorry about the delay in responding.
On a side note you should have a look at havetheballs.com.au Is a car show we are hosting for the foundation here in Australia
Hi, My name is Andrew and my son Ryan is 6yrs old and also has a duplication of Exon 2. I recently attended the conference that was held in Sydney.
I would love to hear more about your son with the same duplication.
Anthony- we live off of truman road east of 23rd street. Did Quinten go to MDA camp this year? I was one of the camp nurses so I probablly saw him if he was there. It was a great experience one I plan to do every year if I can. Cori
I am interested in the info you all heard at the conference. Hopefully we can go next year too. Spencer had a great time at camp with Quinten, she still talks about camp (daily) LOL.
Anthony- Great to hear from you. Nick is 2.5yrs old and doing well. He sees the MDs at KUMC. I am very hopeful for the PTC-124 drug we are one of the kids that will benefit from the drug. I am trying to set up a kansas city area FACEs for parents like all of us. I am to talk to the director of FACEs today. If you are interested in joining me in my quest I will let you know what I find out. Thanks, Cori Tharp
It is nice to hear from you. You don't live too far from us as we are in Omaha. I am glad your son's bone density went back to normal - do you remember how bad it was prior to it going back to normal? We just continue to see Bobby's femoral score get worse but we have seen slight improvement on the lumbar number. Can I ask what the prescription for Vitamin D you have for your son? Our doctor has just recommended the amount Bobby should have and that we should be able to get it from his calcium supplement and multi vitamin - Thanks for getting in touch - it's good to talk to other families:)
We've never been to Truman Lake, I'd have to look at a map to even see where it is. I would absolutely love for everyone to get together. I'm so thankful to meet some fellow Missourians. In our local area I have only connected with one family who has a 4 year old DMD boy. Great family, our lives just don't seem to coordinate so we've rarely seen them.