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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My son has a power assist chair, he has had it for about 4 years now. He loves it, so do we. It has the advantage of the power assist and yet you can still fold it up so it fits in the car easy. We have the Quickie 2 with the Extender system. We looked at several systems and this one was one of the best. We actually tried the e-motion and didn't like it, it was very jerky. With the Extender system the wheels are synced for a smoother ride, there is only one on switch (some of them have one for each wheel), there is only one battery to charge, some had a battery in each wheel and you had to charge them separately. Jon liked it because it really moved and he could push it. I think he felt more in control. We just got his full power chair because he was starting to slow down quite a bit as his arms are getting weaker. We are really unable to use the full power chair right now because we don't have a van to transport it yet -- but we are working on it :)

I think it is a great option.
Susan
I forgot to mention that my son was 14 when we got that chair. He had broken his leg at school and we figured it was safer for him to get around in a chair. We got it just in time for him to start high school, and it worked really well for him.
Justin and my husband went to Cincy in April. They too saw the dr. from Russia and Chad had the same response. I travelled all the way here and I want to see Dr. Wong. However, by the end of the visit he was pleased with the other doctor. It was recommended Justin get a power assist wheelchair also. Due to the cost factor in the power assist wheelchair versus a scooter we are leaning towards going with the scooter. We are going to pay for the scooter out of pocket and save the help for a power chair (the rate he is going it may be sooner than later).

Kristi
Thanks for the responses. This was my main reason for posting, to see if anyone had similar experiences. Yes, we are not disappointed with the dr. he saw, just surprised...wanting expecting to NOT see Dr. Wong.

Regarding the power assist wheelchair, with all the message boards, research, articles, Quest, etc...I can't believe I haven't heard of this chair before this week.

Anyway, thanks again, your responses are very helpful.

Kim
I really hope this doesn't happen to us this May for Max's first visit. We will be driving with a two-year-old and five-year-old from Texas, and I'll be very upset if we don't get to see her!! I know things happen, doctors get sick too, etc., but how disappointing!
Dr. Ribalsky, I may be spelling her name wrong. The same thing happened to us. We waited 2 hours to see someone. Our first appt was with nutrition at I think 8am we did not see anyone until 10 and that was Dr McMahon from rehabilitation. Never did see nutritionist. We then had to move on to cardiology then head back to see Dr Wong but saw Ribalsky. I liked her thought she was very thorough. But know one can take the place of Dr. Wong. My son never did see her, I was able to talk with her while my husband went over to pulmonary. While we were in cardiology the head nurse who does scheduling came over to see us and we complained about the wait and confusion. She was very concerned. I feel that the Dr's are not given enough time to be with patients. 15 min I think it is. Dr Ribalsky said she needs at least 45 min.
Hey Kim,
I think her patient load is getting so big!! We were to see her 1st at 10:30, and finally saw her at hmmm 2:00 after everyone else! I never felt like we were waiting, though. Our other appts showed up in our room on time and kept the ball rolling until she got in there.

I have met Dr. R (not sure of her last name, but it starts with a R I believe). She says in the office...I don't recall that, but we met for sure at conference.

I don't know about the chair. I do know that a chair is Dr. Wongs preference over a scooter. She feels a scooter does not give adequate support to spine and hips. We got the scooter anyway and our 'PT made an insert to provide the support (which Seph HATES by the way). As far as most boys have a scooter or not...I don't know. I know several that have disablity strollers or chairs instead.

I don't mind the wait in Cincy. I feel she gives me as much time as I want or need and expect her to do the same for everyone else. So, I am happy to wait...just have to remember to bring snacks with us!!!!!!
Hi Kim,

We had the same thing happen at my sons appt. in May. When they told us we may be seeing someone else we had the same reaction, although we really ended up liking Dr. Rybolski (?). She was very nice and we felt she was just as thorough as Dr. Wong, but I wish I had known before there was a possibility we would have to see someone else so it wouldn't have been such a surprise.

As far as the power assist chair they recommended one for my son as well. Cole just turned 8 last month and we've been using a Convaid Cruiser so far. Before the visit we'd been discussing getting a scooter for him and he was really excited about it. I know they recommend the chair over a scooter because it offers better support. Cole was really disappointed when we were discussing it because he'd been expecting to get a scooter. He's still very mobile at this point and would only be using it for distances, so we've decided to go ahead with a scooter anyway. Glad to hear Alex is doing so well!

Kim
We also had the power assist chair recommended to us over the scooter at our visit in July. They cited two reasons. One, it's easier than a scooter to break down and transport. Second, it can act as a backup when you require a full power chair, where a scooter doesn't have the level of support needed. If anyone with experience can comment on these, I'd very much like to hear your thoughts about these two "benefits".

This was our 2nd visit to Cincy, they told us that we might not necessarily see Dr. Wong after next time. Sounded like their protocol is for Dr. Wong to see new patients, and once they're on track with their treatment program, you would be more likely to see someone else in the department. I walked away with the impression that all the cases are reviewed in some kind of team environment, so the fact that I might not see Dr. Wong on any particular visit seemed OK.
Keith, my son never had a scooter. We went straight to a manual chair when that time came, so I cant really compare the two, but I know several people who have had scooters over the chairs. The biggest thing I have noticed in the scooters is the lack of back support and lack of leg and hip support. We know several kids who now cant put there legs or knees anywhere close to being together because of having no support. Their legs are splayed apart at all times. They had no knee or hip adductors on their scooters and the muscles "locked" in the outward position. As for the back support, the kids we know were all slightly smaller than their chairs so they could grow to them and that meant that they werent sitting up straight and had to lean forward to drive and steer, putting alot of strain on back muscles.

Anyway, thats just what I have noticed. There would probably be a way to remedy all of those solutions and go with a scooter though.

--Samantha
I have no experience with a scooter but the power assist chair folds up just like a manual chair and I can easily lift it into the back of my van. I do have to remove the seat and chair back but that is easy. When Jon was fitted for his chair they took more measurements that you would take to have a suit tailored so it was a really good fit. There is an accommodation for changes due growth with the chair company through the first two years if needed I believe. We also have never had to have any major maintenance done, the only thing that happened was the quick release handle broke on one of the wheels. Since his high school had a population of 4,500 kids I am surprised that was the only thing that ever broke :). We have never been to Cincinnati but this chair was recommended by his PT and she used to work at an MDA clinic.

Like I said before I think it was a really good choice and Jon has been really happy with it.
Susan
Susan - so, the wheels stay on it for transporting? Did your son leave the chair at school, or get transported to school in the chair (after the broken leg). Can someone push the chair also? How is it maneuvering in a high school hallway? It seems like it'd be harder than a scooter or a full power chair with a joystick. How do you turn it?

Sorry for the 20 questions....

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