I work in communications at the American Heart Association, am a married mother of two, striving to balance work and family life and do all I can for my son, Graeme who was diagnosed a year and a half ago.
About my family:
Married to Richard with a two year old daughter, Keira and five year old son, Graeme.
Name(s) of child(ren)/individual(s) with Duchenne:
How old is Graeme? I would make decision on his size. You will notice increased strength and engery once he starts the meds. He will probably not stay in the chair that much..of course unless long distance. I only started using the convaid stroller chair I believe last year and it's great. He only uses it on long distance trips. I would go for one of the stroller type chairs. My suggestion only. Good Luck!
Hi Tagni, we stayed at the Holiday Inn Riverside. I was really happy with the place, very nice people and the place was comfortable. The location looks a little sketchy but it was a very short distance to the hospital and to nicer parts. Kind of a funny little section. I would go back. I am so happy that you will be heading to Cinci so soon. I will look forward to hearing how it goes.
We weren't able to attend the conference, my husband did Run for our sons 1/2 marathon in Seattle, it was the same weekend. I heard Denver next year, is that right? We are looking forward to going in the future. I'm glad you got to meet both Wendy and Dr. Wong, and you're right they are great. Best of Luck.
Wendy is incredible. She's this tiny little, red head that is everywhere. Every appt we had she showed up at, just to see how it was going. We scheduled a last minute CT scan and she showed up at it. She's amazing, you are going to love her. You are going to get so much good information and doctors who truly care. In fact, Dr. Wong called my family doctor in Washington personally to talk to him about the PLAN. Who does that seriously? Dr. Wong is one of a kind. And I mean that in the most amazing way. The second we walked in the door and met Wendy in person my husband said, "Wyatt is always coming here, no matter what." Let me know how it goes. September right? We are back the first week in December. I am so happy for you and your family that we get to go to Cincinnati. We feel blessed everyday that they took Wyatt as a patient. Talk to you soon.
Hi. You're kids are beautiful. We live in Washington State and ended up getting pretty good airfare rates by flying into Columbus. It's about a 2 hour drive, which wasn't bad, but we made the drive after a over night flight. (I won't do that again, crazy, up all night then driving 2 hours, no way) But since there isn't much traffic, the drive is pretty easy. There is an amusement park just outside of Cincinnati that was pretty fun. Our son is only 16 months, so it wasn't that big of a deal for him, but your son would love it. We stayed in a hotel in Blue Ash, which is about 1/2 hr from the hospital. It's a nice area, resturants and a mall near by. I wish you the best of luck. I didn't really understand why everyone I talked to on PPMD Community encouraged us to take our son Wyatt to CCHMC until I got there. Everyone is so wonderful. We are so thankful that there is a doctor like Dr. Wong and her staff too. Your son is in the best hands going there! Keep in touch and let me how Graeme is doing and of course how your appt. goes. Since your son is a preschooler and not a baby like ours it may not matter, but if possible give yourself a day in Cincinnati before and after your scheduled appts. We left on Friday morning, which in our case made it difficult. Once we got there they wanted to do additional tests on Wyatt that they couldn't get scheduled because we were leaving so early on Friday. If we had been at CCHMC one more day then all the things they wanted to test could get done. Example. When we got there (May 26) they decided that they wanted to do an MRI. Well, they couldn't get it scheduled so I need to do it in Seattle. It can't get done until September. (that's 4 months later). Our son was only diagnosed 6 months ago, so it's new for us too, but if you have any questions please email me on this site. I truly hope you find what you're looking for at CCHMC, we did.
Hi Tagni. My son Baden is 8 and my son Porter is 2. We only see Dr. Iannacconne. We have always had good experiences at Childrens Dallas. We asked Dr. I to be very upfront and direct with us and I think she would have been than way even if we hadn't asked. I think her directness turns a lot of people off. I really enjoy Heather Gilbreath, Dr. I's physicians assistant. Baden sees Dr. I every four months and Porter every 6.
We live in Flower Mound. I would be happy to answer any questions you might have.
Would be great to hear from you,