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.
Tuesday, August 21, 2012
Thursday, August 16, 2012
Make A Wish--Kyle Edition
Kyle finally made his Wish. In a real way.
As I changed his clothes a few weeks ago he was gazing at the poster of Chase Field next to his bed--while his Arizona Diamondbacks bobbleheads and other paraphenelia gazed down upon him--and he turned his head to me, furrowed his brow, and said, "Mom. I just want to be a real baseball player. Can you call Make A Wish and tell them?"
That's when I knew. THIS was his real Wish. We had been waiting and waiting. I suspected it would be something related to baseball, and he has made remarks about what his Wish would be over the last year since he became eligible for a Wish.
But never did he seem so thoughtful--so wistful--as when he turned his face to me and I knew deep in my heart that THIS is his Wish. "You only get one Wish, you know. You really wish to be a real baseball player?" His reply was affirmative. I consulted Chris, who agreed that this was the right decision.
I contacted Make A Wish to tell them that Kyle was ready for his interview. Kyle--just 5 years old--maintained throughout his interview that he just wanted to be a real baseball player, so his commitment to his Wish decision was clear. And then a Dbacks game happened to start on TV here at home while his interview was happening, and that's when the interview essentially ended. Nothing distracts this kid from a Dbacks game. Sometimes I wonder if the players know that there are people like Kyle depending on them to make their day by knocking one out of the park. (Our guys do their best to do that at every at bat, I know that. And they almost always deliver!)
After further questioning, I've determined that Kyle's definition of being a "real baseball player" involves swinging a standard wooden bat at a standard ball. He would need help to do that, but I have full confidence that Make A Wish will make it happen.
(Technically, we don't know how or if Make A Wish will or can grant his Wish, but we're on the edges of our seats to see how it all goes down.)
As I changed his clothes a few weeks ago he was gazing at the poster of Chase Field next to his bed--while his Arizona Diamondbacks bobbleheads and other paraphenelia gazed down upon him--and he turned his head to me, furrowed his brow, and said, "Mom. I just want to be a real baseball player. Can you call Make A Wish and tell them?"
That's when I knew. THIS was his real Wish. We had been waiting and waiting. I suspected it would be something related to baseball, and he has made remarks about what his Wish would be over the last year since he became eligible for a Wish.
But never did he seem so thoughtful--so wistful--as when he turned his face to me and I knew deep in my heart that THIS is his Wish. "You only get one Wish, you know. You really wish to be a real baseball player?" His reply was affirmative. I consulted Chris, who agreed that this was the right decision.
I contacted Make A Wish to tell them that Kyle was ready for his interview. Kyle--just 5 years old--maintained throughout his interview that he just wanted to be a real baseball player, so his commitment to his Wish decision was clear. And then a Dbacks game happened to start on TV here at home while his interview was happening, and that's when the interview essentially ended. Nothing distracts this kid from a Dbacks game. Sometimes I wonder if the players know that there are people like Kyle depending on them to make their day by knocking one out of the park. (Our guys do their best to do that at every at bat, I know that. And they almost always deliver!)
After further questioning, I've determined that Kyle's definition of being a "real baseball player" involves swinging a standard wooden bat at a standard ball. He would need help to do that, but I have full confidence that Make A Wish will make it happen.
(Technically, we don't know how or if Make A Wish will or can grant his Wish, but we're on the edges of our seats to see how it all goes down.)
New School Year! Hooray? Yes! Hooray!
We've been experiencing major technical issues with the twins' afternoon school bus. Our morning bus is big enough for their chairs and comes with a well-seasoned team of driver + aid, but the afternoon bus was a different bus and new folks to train. It's now been resolved, but it was very stressful around here for a few days. If Google can be trusted, then the twins' electric wheelchairs together cost more than the average school bus, which actually does not make me feel any better about the average school bus. I thought they were more expensive than that, and believe me they're still really expensive.
On the plus side, they LOVE kindergarten! And the school seems to be adapting to them very well. Shout outs to the accepting parents who dote on them and us and make me feel so much more comfortable with our new school situation.
I'd be remiss to not acknowledge their teachers and aide. I am confident that they are The Best.
On the plus side, they LOVE kindergarten! And the school seems to be adapting to them very well. Shout outs to the accepting parents who dote on them and us and make me feel so much more comfortable with our new school situation.
I'd be remiss to not acknowledge their teachers and aide. I am confident that they are The Best.
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