Can someone please tell me what to expect from our first muscle clinic. I know its only been a couple weeks since his diagnoses, but I feel like I have been left holding a lit match. From what they said that day it might not be till May before Preston gets in to the clinic. Is this normal? I just feel like we have been left to hang. I have no idea what to expect, or for that matter what to even ask. At this time I am trying to read all the information I can, but I have to be honest, i have no idea what half of it means or for that matter what applies to Preston...I have honestly never been so scared. I even have to wait 4 to 6 weeks longer to be accepted by the Canadian Western MD association. The diagnoses is hard enough to handle, the waiting is enough to put someone around the bend.

Views: 185

Replies to This Discussion

Dear Mom   please please  just store what you know  love and do just what  you would if he were not any different  if you do not the disability will rule your live.Love that baby sing to him and dress him up and every thing she should do as a new.Mom You will learn soon enough what lies ahead. not any of the boys are the same my son is 11 and still walking uses his chair for long walking trip.If you are a praying person that is a great avenue. We moms will help you on you journey none of us want  but have but please not worry as the baby can meet many mild stones just as other children  Caleb sat on time talked early but didnot walk until he was 18 months.  Remember all the things you have to look forward that ist year. Smiles baby coos just not the words DMD. oh you know it there but you can worry tomorrow.   I hope this helps just dont miss his baby years support from family and love love and enjoy that beautiful little guy.    Penny

(couldn't find the 'back-pain..) post here but I'm responding to that and this post. I fee your frustration. I don't know why it's so slow where you're at to get into a muscle clinic. As for the pain issues, I would look into getting a second opinion, I'm wondering if your son has a pinched nerve or something. I'd hound your primary physician for a referral to a specialist in pediatrics spine/orthopedics. But I can say from experience, (I have a 9yr old, dx when he was 5yr old) that there not alot that happens at this time of your son's life as far as how DMD progresses. Ask all of us as many questions as you want and we all will do the best we can to help ease as much of your pain as possible. I'd say that the MAIN thing you should start doing NOW is gentle DAILY stretching of your son's calves and hamstrings. THIS is really important for helping your son stay ambulatory (walking). My husband stretches my son Jake's legs 2 times daily. VERY important. Hang in there Geraldine ; )  We are all in the same boat, but each of us has a unique story. Lots of love, Aspen   

Thank you. I will do that. Just wasn't sure if I was over reacting. your kind words have helped

Let him play in the swiming pool. We found it's much helpful for my son.

 

RSS

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service