AFO Woes

Kyle's feet are very sensitive.  He's had ankle contractures since forever (very common in SMA patients), but when he had tendon release surgery last summer they became even more sensitive for some reason (or he became more anxious/tearful about us handling his feet).  Therefore I just give him sponge baths and his AFO's (leg braces) only come off about once a month, for short periods of time.  The taking off/putting on is just too traumatic, for all of us.

I last put his AFO's on a short ten days ago and when I took them off earlier this week he had significant pressure sores.  Ulcers.  Broken skin, blisters, oozing.  I'm amazed--he never complained about pain at all.

And I'm completely shocked and disheartened.  How does something that is supposed to help him hurt him so badly?  I betadined the hell out of sores like our nurse friend and the wound clinic suggested.  The blisters have improved, but I still am not sure that we won't have to take him to a dermatologist, or the wound clinic.

Have any of you experienced anything like this?  I have been beside myself, kind of full with guilt.  Blah.

Holy Expensive Leg Braces, Batman

I got the babies fitted for their AFO's this week. (Those are leg braces.) They're quite attractive. And freaking expensive! $1300 per pair, per baby. And they have to be replaced as their feet grow, just like regular shoes. Zoinks. And you thought Stride Rite was expensive?

They look something like this:






Many, many thanks to the local Muscular Dystrophy Association, who is actually paying for these this time. They have a certain amount to spend per patient every few years, and these braces fall within their limit. So we'll have to buy next few sets, but they'll chip in every 3 years or so. Woo hoo for free money!