Thanks for the info. I would love the pics of the seats, stools and such. Although we have not done anything formal, we are so lucky that the school is following the suggestions I made at the beginning of the year. They have also made many modifications on their own too. We are so fortunate. The nurse has a whole notebook on her desk just for Sam's info. I will check with her about the meds in case of a lockdown. Never thought of that! We need to address fire drills also. We are to the point where we are looking at making academic modifications. Mostly to reflect executive functions skills (or lack thereof). His brain goes faster than his hands on
paper and pencil assignments. We may look at picking up the pace on introducing an Alpha Smart to him. His class is being exposed slowly, but we may step him up. Timed assignments throw him for a loop so we can work on that too. He is on grade level with his skills, just not very focused or organized.
Thanks for the good info as always. Send more if you have it!!!
PS Our spring break is the week of March 14. John just made hotel reservations for us in San Antonio. I am sure that we could be persuaded to cancel them or you could join us in Texas!!!
thanks, angela, I have tried all of the above and he just won't take. Oh well less strss this way. adn Dr. Finkel said that the studd is moving fast so hope fully by the time he is 7 all will be said and doen and that is just next year. I can del with that. Thanks,, Barb
My son sees Kevin Flanigan as well, he's an awesome doctor. Tyler just had the heel cord surgery and tendon transfer done so while he was in surgery Dr. Flanigan had them do a muscle biopsy as well for the Exon skipping trials. Hopefully that will go well. Yes will keep in touch before the 3rd. Good luck in Florida.
Hi Angela, I would love to meet you for dinner. I'm open on that day. I don't work on Tuesdays. I bet that's hard traveling back and forth, we are pretty lucky here we have great doctors and research in Salt Lake. What doctor do you see here in Salt Lake?
Good luck with the scarf. How is Joyce doing? Tell her we are thinking about her.
Sorry to hear about Kimmie. It's not the run but the reason that counts!
I just emailed Ryan to send more books. I also just sent off for a great advocacy book that is basically an insider's guide to the whole IEP process. I saw a copy once and it was great. I am definitley interested in picking your brain and hearing your insight. I'll try to call you tonight or tomorrow.
Merry Christmas!! Gregory got his service dog, Joma last year in August camp. He is a gentle dog but needs a lot of attentions..sometimes, Gregory just cannot fulfill his constant attentions need. But we all love him very much. May your new year be filled with peace and joy!
hi,wow that was fast,i just signed up a few moments ago,thanx 4 the mesage,we've been w/ppmd for ~5/6yrs but i'mjust getting started w/his email and blog/messaging stuff,we're hang'n on/sometimes only by threads,but we'll make it,hope u n your family will enjoy the holidays;rich
Thank you for the holiday wishes. Hope your holidays are great too. I've been thinking about you lots lately. Hang in there. It will all be worth it!!! We are getting geared up for Disney. Abbie is running the half this year. We are excited. Hope we get to run into each other again soon!
Hi Angela. I also wanted to thank you for putting together the wonderful bag of information(and toy and book for Christopher) that we received at the muscle clinic! We are just getting started with all of this and would really like to get involved. I'd love to meet up with you if you have some time -perhaps after the holidays? Thanks again. Pamela
Thanks. We noticed above that you put together the bags for families at Children's Hospital. Pamela and I wanted to thank you for that, as it was very helpful to receive the info and resources after such a difficult appointment. Christopher loves the book and especially the car, which kept him busy while we talked to the doctors.
Thanks so much for your message. We are just getting started with this and appreciate hearing from you. My wife Pamela will be joining soon too. Thanks for the info on the Colorado group.
I am glad you saw it. You can view it or share it online with your email/cb lists. The online link is www.du.edu/magazine. They are going to link the article in the PPMD Dec Magazine. I was honored to do it and hope that our story represented the masses. While the feature is us, you know that any story is or can be a vehicle for awareness. I am glad that the picture is grabbing people! I love it!!!