Hi Ana, sorry it took me awhile to get back with you. Yes my son used to do the same thing, about 3-6 months before he went into a wheelchair full time. It would scare the crap out of me and I would worry about him, then the next day he was fine. As time went on he would have more and more times when it seamed his legs just kinda "gave out" on him. That's when we decided to have him use his wheechair more so he wouldn't fall and hurt himself. Good luck with this, I know it's hard.
We saw a therapist today, he is deciding what meds will be best for Tyler. Yeah my son talks non stop and is very OCD I think. I aften wonder if that is part of the DMD, or just something else he's been blessed to have LOL. It's nice know their are other children out there like mine and other parents going through the same adventure every day! :)
Oh I was going to ask you. What if any medication does Austin take? We have an appointment Monday with a doctor on changing my son's meds, he has been even more anxious and obsessive lately, maybe it's due to the fact of starting Junior High soon. His attention is sooo out of control right now and non stop taking. Does your son talk a lot too?
Thanks Ana for your post. We all live day to day with our struggles that DMD caues that's for sure. We are in the middle of trying to get a wheelchair van, we just have a standard one now, but need something to get my son's powerchair in and out of easier so we don't always have to take his manual wheelchair when we go somewhere, he's getting quite heavy to lift in and out. All the converted vans for wheelchairs are so dang expensive though, we are having a hard time financing one. Just keeping our fingers crossed we find a decent priced one. Good luck with Austin, he's a cute kid. God Bless.
Thanks Ana! I think they are going to have the EZ Lock system installed on the chair (but we have to pay for that), and then we get the EZ lock as part of a modified van. Is that right? Confusing... I still have to wait a year for my Tahoe lease to be up anyways, but it's nice knowing the chair is coming! Good luck with your van. I hope something turns works out for you soon :)
Thank you - we had a great Easter and I hope you did too. My kids are on break now, which is nice (mostly). I will let you know how our DME meeting goes on April 24th - I'm keeping my fingers crossed that things will go our way for once. With my luck, Nicholas will end up with some weird brand that nobody's ever hear of. California is a strange place - nothing good here but the weather!!! Thanks again for sharing your wheelchair info with me. Take care.
Hi Ana: Thanks for the additional info! Luckily I only have one more year on my Tahoe lease, so I will have to get a new vehicle next May - good timing I guess - although not planned! Those wheelchairs are so expensive is right! Last year I got a quote from a vendor for the C400 Jr. with the stander and it was $40,000, but they were willing to discount it by $8,000 since we don't have insurance coverage for DME. I dedided to try and apply for every kind of state program I could find to get some form of financial help. That is WAY too much to pay out-of-pocket. We don't qualify for most programs and it took me a year of very frustrating phone calls and emails, but I just got approved for CCS (California Childrens Services). I had to pay a fee, but they are supposed to pick up what insurance won't...which in my case is 100%. I am also trying to get a BiPap too because Nicholas was just diagnosed with sleep apnea last month. I appreciate your help and I'm sure I will have more questions for you soon!
Hi Ana: Thank you so much for your helpful info about the wheelchair and the stander. I thought it made good sense to have the chair with the stander for a lot of reasons, but I was told by someone that with this feature the chair would not elevate to different heights. I have been told that this in incorrect though. My son can still walk around the house and a little in the classroom too, so he won't be in it full time right away, but he is falling alot a very weak, so I wanted to get him the chair as soon as possible so he can get used to it. So does Austin's chair elevate, recline, tilt and stand? Can the standing feature be used at any time (let's say everyone stood up at the end of a program to applaud...could Austin also raise to a standing position) or is it only for therapy purposes? That's the part I am confused about with the stander. There are so many different features and I haven't been able to get a demo of any brand. Fortunately I was able to get in touch with a Permobil rep and he is going to meet with us and a vendor, so we can try one. My insurance doesn't cover anything, and California is not willing (yet) to go for the stander and wants to push a cheaper chair. I think I am going to be in for a fight, but it's worth it to try for what is best for our boys! I probably won't get another chair covered anytime ever, so ideally I would like the C500, but that might be too expensive.
Thanks again for the information on my post, it really helps! You have a lovely family. Take care and have a wonderful Easter.
we have participated in the past several years, but I don't know if we will make it this year. I will check my calendar and let you know. It sounds like you are planning on going. It would be fun to meet!
Hi, Ana- I got you note and am glad to hear from you. I am new at this, but am learning with much help from John and Stefanie Killian in Rockwall. Your family is lovely and I like all the pictures of you enjoying each other. My daughter-in-law, Amber Burns joined recently, and as soon as we lern how to post pictures, we will. Jean
Sorry it has taken so long to get back to you. My kids started school, we went to the PPMD Disneyland marathon, and my internet has been down.
We would love to have you come to Sam's Day. It is on October 25 from 10:00 to 2:00 at Flag Pole Hill (near White Rock Lake) in Dallas. The best way to see all the info is to go to samsdaytexas.org. There is a map and a description of activities as well as pictures. Our friend started Sam's Day 4 years ago and it is a fun day. It is an awareness event as well as a fundraiser. Please invite any friends that might like to come too. This year Radio Disney has joined in the efforts and will have entertainment there as well. The day is a little crazy for our family so make sure you find us and introduce yourself. We would love to meet you. We are hoping to have lots of DMD boys there this year.