I am doing good, and I have graduated high school and now I have become a writer, each day I've been writing. I actually just wrote a book not too long ago. It's a western and is about a frontier man and his travels. It's 319 pages and I already started on the sequel. My dogs are doing good, and my family is also doing good. I am sorry it took this long to get back to you. I forget that I had an account on parent project. I should of thought about it sooner but I had to do research on something and forget about it. I am glad to hear that he got a new wii for Christmas. He will have a lot of fun with that. I had one but it was so physically demanding to play it and I've been kind of on the weak side lately. For my condition has been affecting me in how I move. I hope his health is staying good and I hope he has a bright future. Have a good rest of the afternoon and God bless you and your family.
That is GREAT!! I don't have any mixing tips... I just do ours at "medicine time" I do know that Jordan's baby sitter mixes it at lunch time (about noon) and then lets it sit in the fridge until 1, whe he takes it. She has told me over and over "it disolves so much better" but I'm just always running and never think to do it that way. I really should.... It would really probably make my life a lot easier, but whats the fun in that?
I agree, I wish they would do some sort of testing. But at least they are giving the drug again. We go for our second visit 2 weeks from today. Best of luck to you as well! I will keep you informed if I get any other info!
Yes my son was. He was on low dose during the first part of the trial. He is now back on the drug and has been since the 5th of March. He will be 10 at the end of this month. He is still walking right now. I am so sorry to hear that your son has stopped walking. I do agree, I feel that my son declined after coming off the drug. When will your son be starting it again? Melissa
Hello this is David Evans. My mom and I would like to meet at the mall, go to lunch or at a park. I am looking forward to meeting you both and looking forward to some fun times. My phone number is 610-223-1903, and my Moms number is 717-903-5311 and her name is Renee Evans. Thanks and look forward to hearing back from you.
Vonda- Just wanted to let you know that we are thinking of you after the news yesterday. We're just trying to be positive and see this as a road block, but not the end of the road, as Pat Furlong said. I am praying to God for strength for all of us. We'll miss seeing you at our visits, but hope to keep in touch. You have a beautiful family. Ryan is a wonderful young man with a bright, contagious smile. He was always so kind and patient with Elliott. He must be a great big brother :) Please, if you ever need anything, reach out to us.
Will you be down on the 24th for Ryan's biopsy? They rescheduled ours from the 17th to the 24th - so don't know if they did the same for Ryan.
Hope all is well - and everyone is enjoying back to school (Yeah, right... ;-) )
Hello Vonda... Just noticed your profile picture, great family photo! I won't see you for the August PTC appts. as I'll have just had knee surgery and won't be taking my "Thursday shift", but I'll see you in September.
I hope your summer is moving along smoothly and has been full of fun.
I see you live in Reading which isn't too far from Quakertown. Would you be able to join the PA familes in this area to help with the fundraiser in October? We will need people to man the ticket table and the games.
If so please email me at email@example.com so I can put you on the mailing list.
Thanks for reaching out - I know Reading fairly well. We were just at Chop so we don't go back until October. Since we are so new to this not sure how to fit Hershey (Dr. Girordano) into all this. I want to be at Chop but Hershey is closer. Dr. Finkel said we can see both he & Dr. Giordano... still very overwhelming. We, too, have alot of faith in God & know that he will see us through... PTC124 & Utrophin WILL work for our sons.
My sons are 30 & 33 and not on any meds/drug trials; MD Clinic in Los Angeles didn't recommend steriods at the time of dx. Younger son is taking toprol for cardiac and older one is taking lisinopril for high blood pressure. We've been going to Hershey since we moved here from Los Angeles; Rancho Los Amigos in LA area. My daughter in law is a nurse @ Reading Hospital.