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Started this discussion. Last reply by Joni Redlich Oct 27, 2011. 4 Replies 0 Favorites
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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: email@example.com. 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...
Yes, it is a good idea to find out what mutation he has. His doctor should have it in the paperwork he received from the lab that tested your sons blood.
Once you know the mutation, if a trial comes out specific to your sons, then you can decide whether or not to get your son involved.
And, you'll also know that the researchers are working on something that benefits you. It helps your hope.
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.
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