The colleges have a Disabilities office but they don't provide funding for personnel aid. I have heard really good things about Edinbourgh College in PA. This college seems to be able to handle all types of disabilities. We did the financial aid forms and are seeking out scholarships now. Keeping out fingers crossed.
Hi Bev, Thank you for your note. Can you believe that our sons are going off to College. Truly great accomplishments for our boys. Yes, I think Jon would also like to stay in the Dorm, but did express some nervousness about needing someone to help him. So, I think it is little releived that his is living at home. Love the pics of you guys. You all look great!
Beverly, thank you so much for your note. What a kind offer. I would love to take you up on it. I enjoyed the photos of your family. They are beautiful. I will send you a note in mid-Sept once school gets underway and we can arrange a get-together. I spend a lot of time in Gladstone. My two youngest attend pre-school at the Wellspring School. It will be my pleasure to meet you and I look forward to it. Enjoy your summer. Carolyn
Thank you for the document you posted with the anesthetics to be aware of. My son Jonathan (17) has to have a procedure for kidney stones and I printed out your list to take with us to his pre-op appointment and pre-surgery check in at the hospital. Again Thanks!!!!
I enjoyed your slideshow. When did Anthony get to meet Emeril. Adam would be jealous. He loves the food network. In fact made most of Christmas Dinner based on Emeril's recipes he learned while bored at CHOP during one of our PTC visits.
Your family looks amazing, and Anthony is leading a wonderful and worthwhile life thanks to his own will and the dedication of your family. That's all any of us can hope for, that our lives are meaningful and fulfilling, how ever long we are here. My little grandson Skyler is just 5 and hopefully he will have a chance to experience as much as your son has. Sincerely, Barbara
Derek said something about talking with him on his "No Parents Allowed" web page. I told him that would be fine. He said he wondered if people ask if they can ride on his chair? Derek uses a scooter to change classes at school and he says kids always ask him if they can take it for a ride. I think it would be really nice if they would contact each other back and forth. I guess I'll just have to wait and see what happens.
Yes, my husband plays quite a bit. Derek is much better though.
Thank you for getting back to me! I was thinking that since I live so close to AI that I would likely take my son there for a lot of his care, but I am really glad that we have the wonderful resource of CHOP so close, as well. I would love to talk to you more at the conference next week. I will look for you. I am nervous about attending, since I am still at a stage where I cry every time I need to talk about this. I guess everyone there will have been in my spot though. I look forward to meeting you!
I wanted to contact you b/c my son was diagnosed w/DMD at AI Dupont on June 16th. Is your son's doctor Dr. Bean, by any chance? I would be curious to hear your thoughts about the program. I am from DE and have always been a fan of AI, but was not that impressed w/ the clinic that day. For one thing, they offered no suggestions about treatment other than that we should consider steroids. I was hoping for more aggressive posture, w/discussion of drugs coming down the pike, etc. I was then told that they wanted to see my son again in 1 mth, so that the orthopedic dr. could also be there, but when I called to make the appt. I was told they couldn't schedule the orthopedic dr. and either neurologist (Bean or Scavinia) until 9/15. I just took that appt., but in the mean time have an appt at CHOP on 8/8. I am scared to death, and pray that my son, who seems to have minimal symptoms now, at 6 1/2, continues to do well. I would welcome your thoughts.
Good to see you on the PPMD community, When we spoke at last years conference, you were the only one I met who had a child after the knolledge of DMD, we are proud to say, we too are going down that road, a litle boy is due on the 30 December 08, not affected.
Dear Beverly: Thank you for the invitation to the picnic at your house on June 29. I am certainly going to let my daugther know about this, and we will let you know if we are able to attend. Terry (Cole and Jack's Grandma)
I am looking forward to seeing you guys. Ask Anthony what he would like to do, we could use help with 50/50 sales, front gate collecting tickets, or at the merchandise table we are selling some shirts and bracelets. As far as Tony and yourself relax you will have enough work ahead with your picnic coming up. If the June 29th date works we will be there.
Talk to you soon