mamabunny
DIS Veteran
- Joined
- Oct 11, 2012
@tmfranlk:
YES - your LOCAL Shrine Temple should be able to help you secure a wheelchair, and potentially any other DME your daughter will need. Our Local Shriner Temple has a mind-boggling amount of wheelchairs, crutches, etc. to loan out to Hospital patients.
Contact the Hospital Transportation Department at your local Shrine Temple. If, by chance, they don't have any wheelchairs available, do check with your local Masonic Temple as your next source. Be sure to let them know that your daughter is a patient at the Hospital.
On your next visit at the Hospital be sure to ask about what resources will be available after her first surgery for her, and the family. They should also be discussing what to expect regarding surgery and afterwards with her at the visit prior to surgery. If at all possible, ask for a tour of the part of the building where she will be staying. At SHV, the older kids are grouped together, and have an "adult-free" zone they can hang out in. (Sorry. So much I forgot to tell you - see, I had shut off this part of my brain for the last 3 years LOL - had to wake it back up!!!)
Also - bike gloves are great for the wheelchair pusher - as well as users who self-propel. Often, the handlebars that the pusher must use are a hard, ribbed plastic, and they create blisters very quickly. So, taking along a set of universal-fit bike gloves for whoever must use them is not a bad idea! The first time I had to push an adult around WDW, I would have paid $100 for a set of those gloves well before the day was over! Even if the handlebars are covered in memory foam, unicorn fur and cotton candy... use the gloves.
I don't know if you travel with the Shriner's (our Temple has a fleet of vans that run back and forth between the Temple and the Hospitals in SHV & STL - they fly kids to Chicago and other Hospitals around the country as needed) or if you drive yourself, but I would recommend that if you can at all, drive yourself to the Hospital for the surgeries. The only reason I would encourage this is because typically the ride home after surgery is the toughest - you want to be able to stop whenever/wherever she needs. Also, if you cross state lines to go home, be sure to stop at a pharmacy near the Hospital before leaving to fill any pain prescriptions. It has something to do with the doctor who writes the prescription must be licensed to practice medicine in the state that the rx is filled in? Anyway, we learned that early on, courtesy of some of the more experienced parents and van drivers.
Finally, I want to tell you that our daughter had one goal growing up, and that was to be able to walk the stage for her diploma at her high school graduation. The Shriner's Hospitals made that happen; she was able to walk for much longer, and further than anyone ever thought she would be able to before she had to start using her chair on a regular basis. She even got to wear high heels for one magical night at her Sr. Prom! (it nearly killed her, but she did it! LOL) When she was born they told her daddy and I that she would never be able to walk, so the gift they gave her was literally priceless to us. They did all they could for her, and I remain to this day, insanely grateful for it.
The doctors at Shriner's are some of the finest you will find. Unlike many specialists outside the Hospital system, all they do all day is treat children - they are uniquely qualified to deal with the issues that growing bones and bodies require when it comes to surgery, orthotics and prosthetics. Not every child is a "fit" with the Shriner's Hospital system - they do have conditions that they specialize in - but if your child is accepted as a patient there, know that she will receive world-class care. Probably the best thing about Shriner's to me is that everyone who works there is focused on your child, and her well-being.
Truly, I wish nothing but the best for her, and for you - safe travels, swift healing, and all the Magic you can find along the way.
YES - your LOCAL Shrine Temple should be able to help you secure a wheelchair, and potentially any other DME your daughter will need. Our Local Shriner Temple has a mind-boggling amount of wheelchairs, crutches, etc. to loan out to Hospital patients.
Contact the Hospital Transportation Department at your local Shrine Temple. If, by chance, they don't have any wheelchairs available, do check with your local Masonic Temple as your next source. Be sure to let them know that your daughter is a patient at the Hospital.
On your next visit at the Hospital be sure to ask about what resources will be available after her first surgery for her, and the family. They should also be discussing what to expect regarding surgery and afterwards with her at the visit prior to surgery. If at all possible, ask for a tour of the part of the building where she will be staying. At SHV, the older kids are grouped together, and have an "adult-free" zone they can hang out in. (Sorry. So much I forgot to tell you - see, I had shut off this part of my brain for the last 3 years LOL - had to wake it back up!!!)
Also - bike gloves are great for the wheelchair pusher - as well as users who self-propel. Often, the handlebars that the pusher must use are a hard, ribbed plastic, and they create blisters very quickly. So, taking along a set of universal-fit bike gloves for whoever must use them is not a bad idea! The first time I had to push an adult around WDW, I would have paid $100 for a set of those gloves well before the day was over! Even if the handlebars are covered in memory foam, unicorn fur and cotton candy... use the gloves.
I don't know if you travel with the Shriner's (our Temple has a fleet of vans that run back and forth between the Temple and the Hospitals in SHV & STL - they fly kids to Chicago and other Hospitals around the country as needed) or if you drive yourself, but I would recommend that if you can at all, drive yourself to the Hospital for the surgeries. The only reason I would encourage this is because typically the ride home after surgery is the toughest - you want to be able to stop whenever/wherever she needs. Also, if you cross state lines to go home, be sure to stop at a pharmacy near the Hospital before leaving to fill any pain prescriptions. It has something to do with the doctor who writes the prescription must be licensed to practice medicine in the state that the rx is filled in? Anyway, we learned that early on, courtesy of some of the more experienced parents and van drivers.
Finally, I want to tell you that our daughter had one goal growing up, and that was to be able to walk the stage for her diploma at her high school graduation. The Shriner's Hospitals made that happen; she was able to walk for much longer, and further than anyone ever thought she would be able to before she had to start using her chair on a regular basis. She even got to wear high heels for one magical night at her Sr. Prom! (it nearly killed her, but she did it! LOL) When she was born they told her daddy and I that she would never be able to walk, so the gift they gave her was literally priceless to us. They did all they could for her, and I remain to this day, insanely grateful for it.
The doctors at Shriner's are some of the finest you will find. Unlike many specialists outside the Hospital system, all they do all day is treat children - they are uniquely qualified to deal with the issues that growing bones and bodies require when it comes to surgery, orthotics and prosthetics. Not every child is a "fit" with the Shriner's Hospital system - they do have conditions that they specialize in - but if your child is accepted as a patient there, know that she will receive world-class care. Probably the best thing about Shriner's to me is that everyone who works there is focused on your child, and her well-being.
Truly, I wish nothing but the best for her, and for you - safe travels, swift healing, and all the Magic you can find along the way.