I have a husband and 3 kids, 1 16 yo with DMD. I am a RN.
About my family:
My husband John is a farmer, Ben is a college student studing mechanical engineering, Kelsey is our 14 yo pianist. Jacob, our son with DMD, is an artist and poet. Jacob recently won at the regional level the Poets Out Loud contest and will be preforming at the state competetion. Jacob was the boy the Late Senator Wellstone and Congressman Collin Peterson which spurred them to author the MD CARE Act. Jacob has paintings in many offices on capitol hill of the people who work there who have grown to care deeply for him.
Thanks for your comments on my blog. I just read your profile and that is so wonderful to hear about Jacobs talents. So happy for him.
I am actually facing our next big challenge to move to a more handicap accessible house. I have finally surrendered to no longer being able to carry my son Cody up steps anymore. Funny, I think the adjustment is harder on me than him.
thanks cheri for sharing that with me. i am sure there is a easier way to let my son about DMD. but i am not able to muster up enough courage. i am sure that he also has a fair idea about his condition and seems to me that he would able to handle it very bravely.
Thank you so much for sharing your experiences with Permobil and the standing feature. It's so helpful to get opinions from parents who are actually using the equipment. California does not typically pay for standers, so in order to get it, I have to probably have a hearing in court. I haven't seen a demo of any wheelchairs at all yet. I have heard good and bad things about the stander as part of the chair, and I was a bit confused about it's entire purpose (theraputic only, or also functional to raise to standing position at any time as well). I think that is actually the elevator feature? I will keep your comments in mind when we finally get the chair.
Thanks again for responding to my post. I think we met in the cafeteria in Washington DC in 07 (I was with Julie Garcia). My memory isn't that great, but I do remember you because of what a great advocate you are (and how you got your rep to finally sign-on to the MD Care Act). All the best to you!
I can send you the floor plans for the 2 accessible bathrooms we designed. These are the 3rd & 4th bathrooms we've designed; each one meet my son's changing needs. These designs include a roll in shower, roll under sink for ease in brushing teeth, washing hair etc whether my son does the task or I help do it. The plans are spaced so they can drive in and park at the sink...or we can roll them into position with the Hoyer lifts. It's important that there be enough space between the toilet and the wall (48") to accommodate the width of the lift, handle, and my hand if I have to crank the lift. This depends on the style of the lift you will be using. Open space for maneuvering is the next most important factor.
I don't know how to attach the floor plan file to this message. If you want to send an email to me at my personal address, I can send you the bedroom floor plans and the closet plans, too. firstname.lastname@example.org