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
Added by danielle on February 8, 2015 at 2:00pm — No Comments
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
Added by danielle on April 14, 2014 at 9:57pm — No Comments
Well it has been a hell of a week. I have talked to two of my sons physical therapists. They have both in formed me that his hips and legs pretty much lost all muscle. He is losing upper body too, he has lost his grip, his shoulders, his elbows. And he is losing his back and stomach. So now i am wondering what comes next. He already has heart problems so what do we do. Im scared that it is going to fast for him because it just started speeding up like this any suggestions.
Added by danielle on March 14, 2014 at 8:56pm — No Comments
How is it our sons can seem like this doesnt bother them? But then one day you watch him and you see everything he cant do but you sit and think its like this every day and hes fine. But this day he cries. I watched my son at a birthday party today, the other kids were playing with water balloons and a pinata. He tried playing both with them he was to weak to hit any candy out of the pinata and then when one of the bigger kids busted it all the other kids got the candy and my son sat under a…Continue
I know i have heard from a few parents that say there kids were not reliant on a chair until like age 13-16. Well my son is 8 and he has lost almost all hip muscles and is now using a manual chair and a walker. When using the walker he is still falling and sometimes he loses his balance and falls out of his chair as well. Im just curious as to how old your kids are in chairs and what u did to stop the progression.
I never realized how fast these changes happen with our boys. My son Jacob is now 8 years old and in just the last few months he has gone from being able to climb steps to get in the house to not even being able to walk from the car to the car to the house without falling. I didnt realize how much harder it would get, my back hurts from having to take most of his weight coming up the steps and getting out the car, dont get me wrong im not complaining because there is nothing i wont do for my…Continue
Added by danielle on November 6, 2013 at 3:30pm — No Comments
A person looking in
would see a happy little man.
A person walking by
would see this as a lie.
A person living here
would notice the tears.
Tears that fall
when he cant catch a ball.
Tears that soak his cheeks
When someone makes a joke.
Tears that only a mom can wipe away
And make things seem okay.
He's just a little boy
that need to enjoy his life.
He feels like everyone else does
Added by danielle on March 5, 2013 at 10:31am — No Comments
As I sit here
nothing seems near
except all of a moms fears.
she tries to hide the tears
but they never seem to stop
never seems to break the cycle.
She cant let him see how bad it hurts
just to know he will never grow up
He will never know what she goes thru
to help him be happy.
She tries not to let him hear her cry
but sometimes he listens when she thinks hes asleep
He lays in bed wandering why mama is…Continue
Added by danielle on March 5, 2013 at 10:10am — No Comments
Well we made it through 2012 but we had a lot of bumps and bruises on the way through. In january of 2012 jacob was at school and they called me to say he had passed out and wasnt responding. He couldnt walk or talk or anything. When i got there the ambulance was pulling up and we had to go to the hospital. He was admitted for tests and then the doctor at our nearest hospital wouldnt touch him because of the dmd. They sent us home and before the end of the month he was in the hospital two…Continue
Added by danielle on January 25, 2013 at 7:35pm — No Comments
My seven year old son jacob, has been sick for over a week now with bronchitis. We were riding to school one day and he looks over at me and says mama will i be better by christmas. Of course i say yes thinking he was talking about the bronchitis. He then looks at me and says you had whats wrong with me when you were little and you got better. It broke my heart to look at him and say no baby i meant the bronchitis. Of course he looks at me…Continue