I am a mother of 5. I enjoy being a mom & homemaker. I also have some cleaning jobs and fill in as a substitute teacher at the Christian school our children attend. My husband is a teacher there also.
About my family:
Our oldest son, Ryan (13), was diagnosed with Becker's MD when he was 8 yrs. old. It was a real shock to our family. After learning about the disease, we assumed that one of our daughters must be a manifesting carrier, and thus I would be a carrier. We did CPK tests on all of us. Mine was high as well as two of our daughters. Through all of this, we have found that God is faithful. His grace has been real to us!
Name(s) of child(ren)/individual(s) with Duchenne:
I am doing good, and I have graduated high school and now I have become a writer, each day I've been writing. I actually just wrote a book not too long ago. It's a western and is about a frontier man and his travels. It's 319 pages and I already started on the sequel. My dogs are doing good, and my family is also doing good. I am sorry it took this long to get back to you. I forget that I had an account on parent project. I should of thought about it sooner but I had to do research on something and forget about it. I am glad to hear that he got a new wii for Christmas. He will have a lot of fun with that. I had one but it was so physically demanding to play it and I've been kind of on the weak side lately. For my condition has been affecting me in how I move. I hope his health is staying good and I hope he has a bright future. Have a good rest of the afternoon and God bless you and your family.
That is GREAT!! I don't have any mixing tips... I just do ours at "medicine time" I do know that Jordan's baby sitter mixes it at lunch time (about noon) and then lets it sit in the fridge until 1, whe he takes it. She has told me over and over "it disolves so much better" but I'm just always running and never think to do it that way. I really should.... It would really probably make my life a lot easier, but whats the fun in that?
I agree, I wish they would do some sort of testing. But at least they are giving the drug again. We go for our second visit 2 weeks from today. Best of luck to you as well! I will keep you informed if I get any other info!
Yes my son was. He was on low dose during the first part of the trial. He is now back on the drug and has been since the 5th of March. He will be 10 at the end of this month. He is still walking right now. I am so sorry to hear that your son has stopped walking. I do agree, I feel that my son declined after coming off the drug. When will your son be starting it again? Melissa
Hello this is David Evans. My mom and I would like to meet at the mall, go to lunch or at a park. I am looking forward to meeting you both and looking forward to some fun times. My phone number is 610-223-1903, and my Moms number is 717-903-5311 and her name is Renee Evans. Thanks and look forward to hearing back from you.