Hi Karen - I was just wondering how Daniel is doing? Do you have him on a low dose of deflazacort or completely off of it? How about his bi pap - any luck in getting him to use it? What about the walking - how's he doing? Did you guys finish your remodel? Will broke his wrist when we were camping so he has a cast now...it's his dominate hand so am worried about that. Let me know how you are doing. Char
Sorry it took me a few days to get back with you. I have just submerged myself into research. How long have you known your son has DMD? We just found out about 3 to 4 weeks ago. I have tried for a few years to tell the doc that my child did not move like he should be...chalked up to traumatic childhood (he came to me as a foster child in 2006) then it became just a confidence issue. I am glad I did not stop trying to figure out what was going on with him. I wish with all my heart it was not DMD. I thought they would tell me they could fix him with special shoes or something like that. Now I am trying to make sense of all this.
Yes we live in the big city of Pinckney. Nick has a cough assist and it is wonderful - as far as useful equipment goes. He was scared of it at first but now asks for it when these newly formed allergies flare up. Nick had scoli surgery last year and we are doing those sleep studies at U of M as well. We are doing o.k. - I did go to the PPMD conference in June and was overwhelmed by all the info...in a good way!
Hey I think I accidently deleted your reply to me. I was getting rid of some of the comments when I got to the second one which I thought was the first I realized I deleted something without reading it. Did you by chance respond to me about when I asked how your son's IEP went? If you did I'm very sorry but I didn't read it. So anyway how did it go? Feel free to totally ignore me if you would like
No problem Karen. I can understand the school issue being a sensitive issue for you. It is not something we have had any problems with and I really can't even imagine having to deal with all that on top of the dmd. All of our dealing with the school have been how to make it easier for him to get around and thankfully he is in eight grade and we have never had any problems. Of course as a mom I worry about him going to high school next year.
I hope your next IEP meeting with the advocate coming with you goes well. Having a person helping you that is not emotionally involved can only be a plus.
Hi Karen - Will just had a sleep study too. Can you share what the outcome was of his study? Will's got an apt. on Monday (upcoming) to find out about it.
I have noticed that late in the day, he signs or breaths harder - when exhauling. Not sure what is going on. Have you experienced this with Daniel? I am sure it has to do with DMD. It's not every day and not all the time but we have noticed it.
Happy mother's day.
Hi Karen, Thanks for the friend add. Its cool to discover other artists! If you want to see my work, I have a deviantart account with my gallery, heres my page, http://thebigg2005.deviantart.com/gallery/ I do alot of computer wallpapers, I paint with painter IX, and I draw on adobe illustrator. What kind of things did you do? Ian
I do understand. I tired to call your home number and got a busy signal so tried your cell and it was not set up for messages it said....so we will catch up. Just know I am thinking about you and holding all positive thoughts.
We are staying at the Hyatt. Any word on that place? We chose that place because it had and indoor pool too. Michael is a fish. I would love to cross paths with you. Keep my number and call me while you are there. 623-670-3575. Thank you for the exon info too. Is you r son on steroides? Can you tell me what your son is going through right now?
Im confused because when I met Pat Furlong, she said I needed 50. My husband and I alwasy thought it was 51 that we needed. I guess I will find out for sure when we see Dr. Wong. Yes we will be there April 6th - 10th. Our appts are the 7th and 9th. We are so looking forward to this trip. Have you gone before? What do I do or ask?