Hi Karen, Loved your pictures. How are things going? We have been through a lot this year with Jake as far as school, behavior and anxiety but he is coming around. Will you be at the conference this year? We plan on attending. Rosy

Loved the video of Daniel swimming - I'll show Cole when I get home tonight. Hope you are hanging in there - I miss talking to you. The best thing about this site is all the pictures and videos of all our boys...now if I would just take the pictures and videos......I'd be a step closer to sharing them. LOL
Polly

I saw your video of Daniel running. What a great idea. He and my Kevin are very much the same right now.

Hi Karen,
wow! I cannot believe all this activity now on the site. message board still not user friendly but the rest is fun. did you have class tonight?

Hey Karen,
Where are you taking your nursing classes? I totally respect that you are managing full time motherhood to 4 kids, 1 with DMD and taking nursing classes. I can't imagine doing nursing school again :) I can offer to help you with anything with school, but I'd be afraid that after graduating 13 years ago I may not be helpful...but I'm willing to do what I can, I still keep my MI license active.

Thanks for accepting the request!

It is very frustrating trying to see all the issues. I am afraid that someone who really needs that shoulder to lean on is going to get lost or feel as if no one is responding

hey,
so how do we find all the topics like on the message boards??

Karen,
I loved the Daniel Running video! He did a fantastic job of the most difficult thing for my son Alexander. Daniel runs quite well!!
cmcliff

Hi Karen,
I responded to you on the message board but then read another area you wrote in and thought I would email here. It sounds like our 2 Dannys have so much in common. We just got back from Dr Wong and Dr Cripe and Kathy NP want Danny to come off steroids but Dr wong said absolutley not. She said we should start a mood stabilizer. Danny had 4 tantrums increasing in intensity throughout the day of clinic ending with him wiping 3 games off the counter and across room. We are working with a behavior therapist and have decided to really try intensive behav modification. I know exactly what you mean when you say you wish the mental aspect did not exist. This is the part that I find most exhausting about this whole disease. Feel free to call sometime we can compare techniques. Jenny G

OK I just added you to my friends list. Not sure what that means. I guess I'll be talking to you. I love your pictures!!

Thanks Karen, I've managed to get a picture on:) !

Hi Karen,
Love the new scooter! We are looking at getting one, but currently the score is Mom and Dad say Yes! Xavier says NO, so why bother if the kid doesn't want one. So we are going to borrow one since Xavier actually doesn't understand what we are talking about. I wanted to also let you know we have been using the Sandoz deflazacort for a while and haven't noticed a difference, but we have never seen any side effects with steroids, so I'm not sure we would. I know in the US the policy with generic meds they could be up to a 30% difference in the dosage of the med and still be considered ok, so not sure if that still stands true, but that is why with certain medications it is imperitive you stick with Brand name. It may be in your case you need to make sure you always stay with the same brand of deflazacort.
Anyways, enjoy the new scooter and the freedoms it brings!
Jennifer

Hi Karen, thanks for the invite! This site looks it'll be great. I love all the pictures of Daniel! I will try to get some pics on tonight, as long I can figure out how:)

Hi Karen--I accidentally sent you a msg instead of a comment! LOL--I guess u can tell I am super savvy at stuff like this:)

Hi Karen,

Really enjoyed all the pictures. The profile picture is my favorite. What a sweet face your Daniel has.

Take care,
Mary

Thank you. All of this is so new and overwhelming.

The credit for the photos and the videos go to Bradley's uncle. He make a DVD every Christmas and also gives me a disc with the pictures and videos.

Hey Karen!
Love all the pictures and videos of Daniel. Cole loves being able to see his friends on here. He wants to watch the videos over and over again. It's time to start camping again - so I'll start taking pictures again. :-)
Give Daniel hugs from us!
Polly