Saij just turned 8 and his weight has really increased since he started prednisone in Feb 2010. He just recently stopped walking and his currently in an adaptive stroller until we get a power chair for him. I am struggling to lift him especially for the bathroom (he cannot even stand, so I have to hold him in one hand and take off his pants with the other) and shower...he is approximately 55 lbs. Does anyone have any tips that may help or advice on equipment that may be used while we wait for the power chair....I understand it could take up to 3 months.  I am afraid of hurting myself and him while trying to hold him.....thanks......

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You might want to find an occupational therapist, or physical therapist in your area to come to your home and provide instruction for the best way to assist Saij without causing yourself harm. I know there are ways of lifting & transferring that work better than others. Just difficult to explain in a text format; except to say never lift using your back, try using your leg muscles to do the bulk of it. I think this means bending your knees slightly to a "standing squat" position with keeping your back straight. Best to get this from a professional though.

When we had a local occupational therapist come to our home he was paid by MDA for the visit. Try to find one who can bill MDA if possible, perhaps somebody your neuro recommends.
You are right to ask for help. If you hurt yourself, then what? I am a Mom of a DMD boy and also a PTA. I work with the elderly and focus alot on transfers. Think about getting a grab bar in the bathroom, next to the toilet. Park the wheelchair or stroller caddy corner next to the toilet and have him pull up on the bar. Pull the pants down while he is pivoting around. Try to have him do as much as possible. If he has trouble pivoting, then you can get a swivel disk. As far as the shower goes you can also get an extended shower chair that goes over the rim of the tub. My son is 10 and on Deflazacort. It has really helped to keep the weight down.
Thanks for the great tips.....I will definitely pursue the avenue of getting a pt or ot to come and give me first hand advice and will also look into the assistive devices that Christine mentioned.

Thanks so much guys......

cheryl cliff said:
You might want to find an occupational therapist, or physical therapist in your area to come to your home and provide instruction for the best way to assist Saij without causing yourself harm. I know there are ways of lifting & transferring that work better than others. Just difficult to explain in a text format; except to say never lift using your back, try using your leg muscles to do the bulk of it. I think this means bending your knees slightly to a "standing squat" position with keeping your back straight. Best to get this from a professional though.

When we had a local occupational therapist come to our home he was paid by MDA for the visit. Try to find one who can bill MDA if possible, perhaps somebody your neuro recommends.
two of our boys have Duchenne 155lbs other 112lbs.
you will have to have some type of lifting device, Hoyer lift, and there is overhead lift that transports child from bed,bathroom, and to chair.
Ken
Hi Vicky,
Our son was the exact same up until he broke his arm and then we couldn't lift him at all, we rented a Hoyer lift
which is great, but I wish I had known about the sling that goes on the lift, years ago. You slide it under him
and then 2 people have handles on each side to lift him, even without the lift. We sooo couldv'e used that
sling over our many vacations to get Carson in the ocean, lake, boats etc.. It was always such a challenge
to try to carry him through sand and waves and docks without dropping him.

By the way when I do lift Carson I always rest my elbows on my hips, it helps save your back.

Cindy

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