so my family and i are heading to cincinatti to see dr wong. any advice or any recomendation on a place to stay that is affordable 

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Hi Jessica, You can call Dr. Wongs office and they have discounted hotels you can book through them.  We stayed at the Raddison on the riverfront, its only about 10 or 15 minutes from the hopsital, it has an indoor pool and with their discount was about $78 a night.

Hi, Jessica,

If you get on the hospital website and look in the Families and Services Tab>Visiting Information>Services for Traveling Patients>Guest Services>Where to Stay, then click on the Hotels and Lodging which gives you a 25 Hotels Link.  That will pull up a list of hotels and tells you what services each hotel offers. We stayed at the Holiday Inn, Cincinnati Riverfront, which was actually across the river in Kentucky, because it was close, had a shuttle available to the hospital, and was under $80 a night.  The people there were so nice, the restaurant was good with very nice staff.  I am going to try the Ronald McDonald House in July, if we can get in, but if not will go back to the Holiday Inn.  One other thing - if you decide to stay there, when you make your reservation, tell them you want the Hospital Discount.  They will give you the number to call the hotel directly to make your reservation, because it doesn't pull up in their main headquarters. But make sure you tell them when you reserve your room.

That may be way more info than you were looking for! Lol!

thank you so much for the info... if you guys dont mind me asking how was your experience when you first went to cincinatti ?

Jessica, I have actually just called the family center (I think it's called) at the hospital and they booked everything for me.  We too stayed at the Radisson!  Good luck.  Dr. Wong is amazing, I hope you folks love her as much as our son does.  We've been traveling from Seattle for about 3 years to see her and it's worth the trip.

Jessica, our experience was wonderful! Even when hearing things I didn't necessarily want to hear, the doctors and nurses were so compassionate and helpful, it made it so much easier.  Dr. Wong and her team are not only extremely knowledgeable about Duchenne, but also, because of her experience, she knows about procedures about how to order steroids, wheelchairs, etc. The doctors around here were very nice, but they just don't have the experience that they have up there.  I felt so relieved and assured that Bryce was recieving the best care.  We are from Texarkana, Texas, and though it was a long trip, it was so worth both the time and the expense, even having to go every six months. I don't know how far you will have to travel, but you will be so glad you did! I wish you the best!! Let us know how it goes!

I was absolutely scared out of my mind.  I had been told some really awful statistics about my sons condition (at the place he was diagnosed).  Thankfully after meeting Dr. Wong, I learned that much of the information I was told, was out of date.  The staff at the hospital from the lab techs, to the cafeteria folks, to the nurses, to the security guards are helpful and amazing.  Everyone makes you feel like the most important person in the world.  It's like you walk in the door and they "wrap" their arms around you.  The first time we went we did some other stuff too.  We went to the children's museum (which if you have the time I totally recommend, the family services at the hospital can get you discounted tickets), and the zoo.  

 

When we were there a few months ago the hospital was going through some major renovations, so make sure you give yourself extra time to find your way around.  Good luck! 

Thank you so much for the info I have been feeling nervous about going but now I feel a lot better.

I totally agree with Melissa! I also recommend the Aquarium!

We will defenitly try to go ;) thankx
We are from new York and I have been taking him to the mda clinic here and a lot of things are not feeling right to me

Franky just turned 8 and he has been in a wheelchair since the age of seven he is loosing upper strenght very fast, he is weighing 157 and all the tell me is that is part of dmd and that's what happens and that there's nothing I can do
And iam not taking that for an answer.
I ask them is that because of the type of delition they say they don't k.ow I know this us part of dmd but I just want to know what is causing it to go so fast. My neurologist want to take him of he's steroids and my cardiologist doesn't I just want to have answers and want everyone to be in the same page. Is like they are not talking to each other.
The best part of seeing dr. Wong is you don't have to feel like you're not being listened to. They want you to be 100% involved with your sons care. I know that this disease effects every child differently, but if you don't like what your md clinic is doing for him or something doesn't feel right. Listen and trust yourself. No one knows him like you do. Another great th thing about cincinnati, they help you arrange everything. One person schedules everything. You don't have to schedule each appt they do it all. And I believe it's mondays that they do it but once a week talk about the patients for that week. Cardio, pt, ot, nutrition, pulmonary, endocrine, and dr. Wong meet and get on the same page. When you walk into an appt at cchmc you don't have to explain over and over your concerns the different depts talk to each other. Ive never seen anything like it. They have a carrier ckclinic too for moms or sisters who need care as well. I wish you the best of luck take care. And keep me posted. I would love to hear how your appts go.

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