Hi -

My husband and son went to Cincinnati Children's Hospital this past week for Alex's 3rd annual checkup. I have a few questions about this visit.

First, this was the first year that Alex did not see Dr. Wong on a scheduled visit (they said hi to each other in the hallway). He did see a dr. (Russian woman)...I don't have her name with me at this moment...sorry. My husband was very happy with her and liked her but we were not prepared that we were not seeing Dr. Wong. Does anyone else visit Ciny and not see her?

2. The PT person (Ann or Michelle) spoke to Will and Alex about possibly getting this type of wheelchair. It is a power assist manual wheelchair..See this link:

http://www.quickie-wheelchairs.com/products/EMotion-M12-Push-Rim-Po...

My son, Alex did not understand why she was showing this chair to them, because he has a scooter (for 3 years) which he loves. He is telling his dad, "Dad, I don't want a wheelchair". Just wondering if anyone has used this or has it been recommended to any other family? I think most boys ride scooters.

Unfortunately, this visit did not go as smoothly as the previous 2 years...(I think they spoiled us) ha ha... Years past, they went from one appt to the next, with little wait time, out of there by 2:00 or 3:00. This year, was some appt. went late, waiting 2 hours for someone to show up and never did, appts. moved around etc. I know this does sometimes happen. I just hope this was a "unusual unfortunate day". Maybe, her patient load is increasing and this is part of the reason this happened.

But, all in all, we love Dr. Wong and team and appreciate everything they do for us, and we are pleased that Alex is still doing well.

Thanks -

Kim

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We had Dr. Ribalsky? too for Kelvin's 6 month visit since taking steroids (we live in Ohio, so can go a bit more often). She was wonderful, took tons of time and was very much in line with Dr. Wong. She even believed in the Noni Juice we give Kelvin and knows about it. I was shocked and thought, wow, this is great. She said she thinks it is why he is breathing great (for the first 5 years of his life, Kelvin was always having respiratory stuff, always snored and always had to be proped up at night to breathe good - that ended the week he started Noni Juice) and that she too knows that it helps with immune support. Kelvin hasn't been sick for 1 year and 8 months. He never missed 1 day of school this year being sick. They said too that Dr. Wong is trying to be involved as much as possible with research. I am ok with that, as she will work until the end to help our boys and that is where I want her (as long as I have someone who thinks like her and knows her protocol). Her team is still the same, great doctors all around. If anyone shows up on tests, I'm sure she'll be there with you. Michelle
Let's see . . .
First of all Jon has the Quickie 2 with the Xtender Power assist system. The one Cincinnati appears to be recommending is the e-motion which I think will fit on any manual chair.

Yes you can leave the wheels on for transport. There is a quick release on each wheel so they do come off quite easy, but I have found it easier to just leave them on. I drive a GMC Safari, so I have the room to leave the chair assembled. Jon stayed in the chair at school, he needs help to stand up and there was no reason for him to leave the chair anyway. For a while he took the bus to school and stayed in the chair, it has a seatbelt and they used tie downs just like for a power chair. He just got a Quantum Q600 power chair, mid-wheel drive, I think that the power assist maneuvers so much better. They are going to make some adjustments to the programming for the new chair so we will see what happens. You turn the chair by pushing forward on one rim and backwards on the other, and you can turn a full 360 on a dime, it has a very small turning radius. I was amazed sometimes at the tight spaces he could maneuver through. We did try the e-motion at the Ability Expo and found it very jerky and not as maneuverable. So unless they've improved it in the past four years I wouldn't recommend it. I have to admit while it is very easy for Jon to push himself it is not as easy for us to push him, but we are thinking about looking in to buying the plain old manual wheels now that he has the full power chair.

My hubby the engineer wants me to add that Jon's chair has a 3:1 power ratio, there is also a 1.5:1, but we figured that 3:1 would be better for a longer period of time since Jon was going to get weaker, not stronger. He also says that the e-motion will give you a PIO (Pilot Induced Oscillation) where the Xtender won't because of the circuitry, I am sure he will be more than happy to explain.

Susan
We live in Cincinnati and visit Children's on an annual basis. My son Alex has seen Dr. Wong since he was diagnosed at age 3 (he is now nearly 11). He absolutely LOVES Dr. Wong! Her schedule is so crazy, she added Dr. Rybalsky (sp?) to help with the load. At first we were skeptical, but Dr. R actually spends as much time as we needed - never rushed - and we enjoy her visits and guidance as well. Still, Alex craves Dr. Wong and makes it a point to find her at every trip. And, to her credit, Dr. Wong makes time to find Alex! As she is passing in the hall, or at her desk filling out papers, she ALWAYS drops what she is doing to make Alex feel special! She is great, and so is Dr. R. We always look forward to our Children's visits.

Dave
Dave,
We lived in Cincy when Sam was diagnosed in 2005. We moved back home to Texas in 2007 but still continue to return to Cincy every 6 months. There is just nothing like Dr Wong and her entire team. And I agree with everything you said about Dr R.

Laurie

Dave Click said:
We live in Cincinnati and visit Children's on an annual basis. My son Alex has seen Dr. Wong since he was diagnosed at age 3 (he is now nearly 11). He absolutely LOVES Dr. Wong! Her schedule is so crazy, she added Dr. Rybalsky (sp?) to help with the load. At first we were skeptical, but Dr. R actually spends as much time as we needed - never rushed - and we enjoy her visits and guidance as well. Still, Alex craves Dr. Wong and makes it a point to find her at every trip. And, to her credit, Dr. Wong makes time to find Alex! As she is passing in the hall, or at her desk filling out papers, she ALWAYS drops what she is doing to make Alex feel special! She is great, and so is Dr. R. We always look forward to our Children's visits.

Dave

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