As you all know my son is 10 years old now and the doctors are wanting him to have the spinal fusion surgery. What are the thoughts on this particular surgery? How many kids have had this and came…Continue
How many of you have boys that are having a hard time using the bathroom? Such as not knowing they have went in there pants and afterwards still not knowing until they have been shown. My son has had…Continue
As parents of boys with dmd how do we deal? Our boys are wonderful and we love this dearly but how do u deal with having your heart broke at every doctor visit. As most of you know a few months ago we were being sent to a lung specialist and another heart doctor. Well we finally had both appointments and the heart doctor couldnt even find his LVH now i dont know if that means i have a crappy doctor this time or if by some chance it corrected itself. However the lung doctor wasnt quite so…Continue
As most of you know my son Jacob has been dealing with DMD since he was 4. Well we keep getting news and all of it bad I'm just wondering when does the bad news stop and we get some good news.
On our last visit to the doctor it went as it usually does except for the fact that he had been sick for over a month. And the doctor cant explain why so we are having to wait a month to see a specialist for his lungs because they think they are to weak to fight a common cold. He is still…Continue
I'm as small as a chair.
I'm as strong as a gorilla.
I'm as quiet as a snake.
I'm as wiggly as a worm.
I'm as fast as a tortoise.
I'm cuter than a button.
I'm more loving than a puppy.
I'm soft like a pillow.
I'm perfect just like I am.
When a 8 year old can write this and be happy with the way they are why cant adults be that way to? We may not think that our dmd boys are perfect and we may try to find ways to fix them…Continue
We went to the mda clinic on the first. The doctor there told us that my son doesnt need to wear his AFOs (leg braces). This made my son and myself very happy because he hates wearing them. Well after being told this we went to the pt and she informed us that he needs to wear them regaurdless of how strong his ankles are because with him being in his wheelchair his heel chords will get tight and he wont be able to take a step. After my son heard this he got scared he says im scared not to be…Continue