We are looking at purchasing a modified van. As we spoke with the Permobil representatives they were saying you had to have a rear entry van for their wheelchair to lock into place properly. Something about with the turning of the wheelchair into the van the automatic way doesn't work. We really don't want to do the manual tie down. I am thinking side entry for ease of travelling, don't have to move things to get wheelchair out. Husband is liking the idea of the rear entry. If anyone has…See More
Can anyone share their experience when your son has done the sleep study in Cincinnati? My husband will be staying with him that night. What accomodations does the room have? Shower? Does the hospital take families to the airport after their appointments? Husband and son are not going to have time so we are not renting a car this time and want to be sure they have a way to the airport. Thanks for answering questions and if you have other suggestions please let me know. KristiSee More
Looks like everyone is receiving an email from a person named Brandon. His page has no reference to DMD only a marketing website. Does anyone know who this person is and why he is sending a mass email in regards to connecting at linkedin? To me it doesn't seem right...See More
Has anyone heard of any updates on the Biostrophin trial going on? Dr. Mendell, Samulski and Xiao Xiao are the ones spear heading this trial. It made big news when it was starting and now there has been no mention.KristiSee More
Hey Kristi. I am so sorry it took me so long to get back to you. I hope you have an answer it the insurance/medicaid answer. If not, here ya go......Justin has Mediciad and private insurance through UnitedHealthcare. For everything, UnitedHealthcare always pays first and Medicaid is always the secondary insurance. Whatever United refuses to pay is automatically sent to medicaid.
Great to hear from you! Jordan is still walking and will be starting high school this year. I'm meeting with the counselor this week to hand-schedule his classes so they are as close together as possible. He has trouble walking long distances and still refuses to get in a wheelchair. We went to Europe this summer for the trip of a lifetime. Saw a lot of France and Switzerland and Jordan even went paragliding in the French Alps. His Dad had to carry him several times but we managed. I will try to get some pictures up today. How's Justin doing?
They didn't say too much at our visit, but I believe their reasoning is a chair offers better support/posture. They also discussed insurance and how if we utilized our insurance for the scooter they may not pay for something else for up to 5 yrs., and we could have problems if we needed a power chair before then. In Cole's case they felt the chair with power assist would serve his needs for at least that length of time and we wouldn't run into that problem. All that being said, I think we are still leaning toward a scooter. I'm planning to contact a couple of DME vendors in our area this afternoon and find out some more information. I'm interested in whether or not I would be able to have a pediatric seat made, like I have seen a few others mention.
I was just looking over old posts trying to read anything on scooters and power assist chairs. I saw your post from April on the subject and was wondering if you'd made a decision between the two. My son will be eight next week, and when we where in Cinn. in May the rehab Dr. suggested the power assist chair to us as well. Cole still gets around really well but definitely needs something for distnace. We were leaning towards a scooter but now I don't know. Just wondered if you'd gotten any other feedback on this. We have a convaid cruiser (adaptive stroller) now that still works well, but Cole was really on board with the idea of getting a scooter. Now we're just having trouble figuring out what to go with.
About the serial casting. My understanding is that we are not using the same protocol as the one from Cincinnati. We are going in weekly for cast changes. When I spoke to the therapist that is doing Jon's she was aware of the other protocol but was more comfortable using the one she is using on Jon. Jon's casts are fairly light, not nearly as bulky and heavy as when your casted for a broken bone. She uses a lot of tape to bring his foot up into the proper dorsoflexon (I am learning a whole new vocabulary) and then applies the cast. When I asked her about the difference in the two protocols she said she personally had better results with the one she is using. I personally believe that there is more that one way to do a lot of things. I am not too worried about Jon losing the ability to walk because he is walking in the cast, just a little slower.
I see you're in Texas. We have a Texas group that we'd love for you to join. http://community.parentprojectmd.org/group/texasfamilies Where exactly is Edna? I know I've heard of it, but can't place it.