Guest guest Posted September 2, 2005 Report Share Posted September 2, 2005 Hello Sally, There has to be some programs out there for your child. I know here we have a program called Special Medical services which helps out with things like scooters, hand rails, etc for children with physical challenges. Where are you located? This might be something worth looking into for help with the financial part of equipment. Heidi - mother of 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2005 Report Share Posted September 2, 2005 RE stairs - Someone suggested to me that it was easier to come down stairs backwards - it is! Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2005 Report Share Posted September 2, 2005 Hi Sally, Stairs do put me off a bit, but a strong railing puts me on again. If there is no comfortable railing, I catch hold of somebody and give him/her a 15 minutes crash course on how-to-help-a-'sweet-teenager-with-some-weird-problem'-up-a-staircase...hehe. If there is no help/railing available and it's essential to go upstairs, I sit on the first stair and climb backwards with the support of my hands. My AFOs have helped me a LOT, but not when it comes to stairs. Cane also proved useless. Anyway, I love climbing stairs at my home as they have a very strong railing...gives my legs good exercise... Take care... (Loved the way Gretchen told her childhood stair-story) Reema Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2005 Report Share Posted September 2, 2005 I still avoid houses with stairs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2005 Report Share Posted September 3, 2005 Hi , I only have 3 stairs to get into my house. I don't like stairs either. However, there is 11 stairs to get down to the basement to do the laundry---well the kids have been so elected to do Heidi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2005 Report Share Posted September 7, 2005 Hi Sally, We live in a two story home, when my son was Gavin's age, he sit on the floor and get down on his bum. He is doing the same thing now after his feet surgery three month ago. He never falls from stairs. I am thinking to buy a wheel chair accessible house in the future. It's hard to find it. Take care, Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2005 Report Share Posted September 14, 2005 Hi Heidi... We're in Ottawa in Canada... you had a great suggestion and I checked with our social worker at the clinic...we can get some grants for modifications at home and equipment from the local chapter of MDA and March of Dimes (do you have that in the US?) in some instances and can claim some costs on our provincial taxes.. not much though because Gavin is not officially considered disabled yet...he can walk too far, albeit slowly. Thanks and cheers Sally Stomach problems/ Doctor referral I have CMT 1A, and have had terrible stomach problems for the last eight months. My questions to the group are as follows: Has anyone had stomach problems, nerves, nausea,or any related issues. Second, is anyone seeing a specific doctor in the Phoenix Arizona area that is fluent with this disease. Has anyone been to the MDA Clinic here for help? All information will be greatly appreciated. I am thinking of having a CAT scan on my stomach. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2005 Report Share Posted September 14, 2005 In , " Pehrsson, Sally " <pehrsson@n...> wrote: Hi everyone... Thanks so much for all your comments and suggestions...they really help... We've been thinking pretty hard about this and really want to keep Gav safe but in as routine an environment as possible for now. The simple, as you say Gretchen, solution is to try to keep him safe but moving. We want him to be able carry stuff up and down stairs freely so we've instigated a backpack system...it sits at the bottom of the stairs ready to transport whatever comes up, so that he can keep two hands free for both handrails...we've also been reminding him to go down on his bum whenever he feels more unsteady. We saw the physiatrist and physiotherapist yesterday and they are changing his AFO's..his toes and feet are starting to turn outward and roll inward and under..it seems that this is the source of increasing instability at the moment. The new AFO's should keep his toes and forefoot in a more normal stance and his feet flatter. As Dr. McCormick said...we just wish they could grow slower and steadier, instead of the spurts that cause alot of the problems. On a positive note, last night he went on his bike with training wheels all around our block for the very first time! It was such a thrill to watch him go for it and have fun to boot! I think all the quad exercising is paying off. Cheers and thanks Sally -----Original Message----- Quote Link to comment Share on other sites More sharing options...
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