Christina: We are using an at home teacher right now for our son Chris. He did not have surgery, but fractured his femur. We started out with emailing homework, back and forth with some of his teachers (not all were on board with this system), then got home schooling twice a week with an actual teacher. This seems to work better since the teacher corrects the work right away - I do not have to email back and forth. The resource teacher actually set this up. Hope this helps a bit. Michele PS Nice to "meet" you.
somewhere I read you asked where to get deflazacort from. we get ours from Mastersmarketing.com. It's located in the UK but they mail it to you after they receive the rx from your doc. They have an 800 number for US patients but I usually contact them by email. Ask for Julie, she can assist you. Also, you won't want to get too close to running out of deflaz before your next re-order. It can take awhile to ship AND orders sometimes get backlogged just before Christmas since the mail is bogged down. I usually order just before thanksgiving so as not to run out.
We live in a different county - but have been going through IEP's for Cole since he was 3 - I would be glad to try and answer any questions you have. It's so hectic once I get home - I know it sounds horrible but I can actually talk easier when I am at work. My work number is: 949-451-5216 and my work email is: firstname.lastname@example.org. I'll be out of the office until about 11 today - but then there the rest of the afternoon until about 5:30.
thanks for watching the video. yes the bike was specially made for Danny and just since starting the Juven has he been able to ride a trike and couple feet of his brothers 2 wheeler with training wheels. We got the bike at the abilities expo in our state by a company named triaid out of maryland. triaid.com worth every single penny to see that smile while he rides.
It was great meeting you and your family recently. I just wanted to remind you to contact MDA and find out what they have in storage at their loaner closed...your brother might be happy with a moterized chair.
Sorry I didn't have any straws on hand when you guys were here. Guess what I have a lot of now...
Can Nick swim? Does he require assistance getting in and out of the pool or jacuzzi? Most of our activities will be in the back yard but there is stuff he can have fun with inside if he prefers. Is he shy? So is Alexander, my son. Let me know what you think will make Nick more comfortable while he is here...hopefully he will have a little fun.
I'm sorry about your son's diagnosis. My son, Cole, is almost 9 and was diagnosed just over 6 years ago. We live in Tustin - which is just North of Irvine off of the 5 fwy. Isn't Santa Fe Springs near La Mirada? My husband lived there until he was in 6th grade and then his family moved out to Riverside. We are hoping to make it to Cheryl's house on the 29th - I hope you can make it out there too.
I'm sorry that you had to find us, but you will find the most wonderful, resourceful group of parents here that together are doing everything we can to fight the battle against Duchenne. I really hope you can make it to the get together next weekend.
My son Avery turned 4 in April and was diagnosed a couple of months before his 3rd birthday last year. Santa Fe Springs isn't far from us at all. You will also find a few other families that live even closer to you. Your son is cutie pie!
can you send me your private e-mail address. that way I can give you information on where we are and do you need directions? it is the 29th at 1:00. and can you tell me how many will be coming in your family? that way I know how much food to have. I am really looking forward to this get together, so is my son Alexander!
Did you know we are hosting a DMD get together June 29th, Sunday at my house in Riverside? You should come and meet others, so far about 5 families will be there and I think there are a couple of 5ish boys. Does your son swim? There will be swimming for the kids (or anyone else) but please bring arm floaties if he doesn't swim well right now...
I would love to meet you guys. My son, Alexander is 9.5 DMD and we have another Max who is 8.5. We are really excited to meet some of the boys in SoCal so I hope you can take the drive out here. Let me know if you can come and I will send you the info on where we are and all. Also, please consider joining the Cal group in the groups section here. We need to stay connected here in Cal!!