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So as most of you know two of my three boys have a genetic bone condition that causes lots of trouble. For anybody that cares, here's a link to what it is:
http://ghr.nlm.nih.gov/condition/her...iple-exostoses
It kind of glosses over the day to day reality of living with the disease, but it's a reasonable summary. Because I don't like typing big words, I call the exostoses "bumps". So here's the events of the last couple months...
Oldest kid:
-Injured both feet in separate incidences. The bumps in his feet are making recovery difficult. There's a ruptured tendon in his right foot and the bones in his left foot have shifted in a weird way. Both feet are currently in braces awaiting the Cam Boots to arrive. We're going to give it a few months before we go in and surgically repair the feet.
-The foot injuries have caused a domino effect and now he's having trouble with his right hip. Not sure what we want to do with it yet. For now the game plan is to see if it gets better as the feet heal. Nobody's holding their breath that it's going to work.
-He's left handed and there's bumps locking up his left wrist. He has an appointment with the hand specialist next Monday to make a game plan for that.
-He's been having trouble for years with episodes of sporadic numbness/paralysis in both arms. There's finally a diagnosis. He's got a significant spinal deformity that's causing the effected vertebrae to pinch nerves as he moves his head. There's absolutely nothing they can do about it. He'll have to learn to live with it, but it also means he'll never be medically approved to get a driver's license. This was not good news to a 16 year old.
Youngest kid:
-He had surgery a few months back to remove a bump that was causing major issues in his knee and two bumps that were locking up the distal ends of the tibia and fibula. Surgery went well, but he is having complications with restoring blood flow to his left foot. It's getting better, but far too slowly for his doctor's comfort. We need to do the same thing on the right side, but the doctor doesn't want to do that until the circulation issue on the left side is cleared up.
-He fell a few weeks ago and, due to the extra stress put on the tendons and ligaments by the wrist deformities, he tore up his left wrist. It's currently in a stiff brace (the doctor took mercy on me and didn't cast it).
-We just got back from and appointment with the hand/wrist specialist. This appointment was made before he fell, and it had everything to do with his right wrist, which is far more severely deformed than his left wrist. It needs a lot of work. The nurse will call me tomorrow to hash out a schedule. Bumps need to be removed, the radius needs to be straightened out and the ulna needs to be lengthened.
-He's starting to have trouble with his right hip. We'd had a major deformity in his left hip fixed three years ago, but left the right one alone. The left side was far more severe and needed urgent attention, as it was putting strain on the femoral artery, which caused a potentially life threatening situation. The right hip wasn't nearly as bad, though still not normal. He's now having difficulty on that side. We're going to look into fixing it when we go into the right knee.
Middle Kid:
-This one is just crazy. He decided to attempt an extremely steep hill on a skateboard. The road is mostly asphalt, with about 50 feet of concrete at the steepest part of the hill. He got the speed wobbles and when he hit the seam as the road switched back to asphalt he went flying. That resulted in a broken wrist, major road rash up and down his arms and a minor kidney injury that resolved on it's own. Thankfully he was wearing jeans and a helmet, or it could have been worse. The helmet actually broke into two pieces.
Extra Kid:
-She's having pretty typical issues for a kid in her situation. I don't mind at all being on the receiving end of 2am phone calls, but it does add to the overall stress levels. I'd much rather have her confide in me than do something that would hurt herself or others.
For fun, here's a picture of the little one's right wrist. The big blob between the two long bones is one of the offending bumps. Both bones should be the same length and they're both supposed to be straight.
So anybody have any really good liquor they can send my way?
http://ghr.nlm.nih.gov/condition/her...iple-exostoses
It kind of glosses over the day to day reality of living with the disease, but it's a reasonable summary. Because I don't like typing big words, I call the exostoses "bumps". So here's the events of the last couple months...
Oldest kid:
-Injured both feet in separate incidences. The bumps in his feet are making recovery difficult. There's a ruptured tendon in his right foot and the bones in his left foot have shifted in a weird way. Both feet are currently in braces awaiting the Cam Boots to arrive. We're going to give it a few months before we go in and surgically repair the feet.
-The foot injuries have caused a domino effect and now he's having trouble with his right hip. Not sure what we want to do with it yet. For now the game plan is to see if it gets better as the feet heal. Nobody's holding their breath that it's going to work.
-He's left handed and there's bumps locking up his left wrist. He has an appointment with the hand specialist next Monday to make a game plan for that.
-He's been having trouble for years with episodes of sporadic numbness/paralysis in both arms. There's finally a diagnosis. He's got a significant spinal deformity that's causing the effected vertebrae to pinch nerves as he moves his head. There's absolutely nothing they can do about it. He'll have to learn to live with it, but it also means he'll never be medically approved to get a driver's license. This was not good news to a 16 year old.
Youngest kid:
-He had surgery a few months back to remove a bump that was causing major issues in his knee and two bumps that were locking up the distal ends of the tibia and fibula. Surgery went well, but he is having complications with restoring blood flow to his left foot. It's getting better, but far too slowly for his doctor's comfort. We need to do the same thing on the right side, but the doctor doesn't want to do that until the circulation issue on the left side is cleared up.
-He fell a few weeks ago and, due to the extra stress put on the tendons and ligaments by the wrist deformities, he tore up his left wrist. It's currently in a stiff brace (the doctor took mercy on me and didn't cast it).
-We just got back from and appointment with the hand/wrist specialist. This appointment was made before he fell, and it had everything to do with his right wrist, which is far more severely deformed than his left wrist. It needs a lot of work. The nurse will call me tomorrow to hash out a schedule. Bumps need to be removed, the radius needs to be straightened out and the ulna needs to be lengthened.
-He's starting to have trouble with his right hip. We'd had a major deformity in his left hip fixed three years ago, but left the right one alone. The left side was far more severe and needed urgent attention, as it was putting strain on the femoral artery, which caused a potentially life threatening situation. The right hip wasn't nearly as bad, though still not normal. He's now having difficulty on that side. We're going to look into fixing it when we go into the right knee.
Middle Kid:
-This one is just crazy. He decided to attempt an extremely steep hill on a skateboard. The road is mostly asphalt, with about 50 feet of concrete at the steepest part of the hill. He got the speed wobbles and when he hit the seam as the road switched back to asphalt he went flying. That resulted in a broken wrist, major road rash up and down his arms and a minor kidney injury that resolved on it's own. Thankfully he was wearing jeans and a helmet, or it could have been worse. The helmet actually broke into two pieces.
Extra Kid:
-She's having pretty typical issues for a kid in her situation. I don't mind at all being on the receiving end of 2am phone calls, but it does add to the overall stress levels. I'd much rather have her confide in me than do something that would hurt herself or others.
For fun, here's a picture of the little one's right wrist. The big blob between the two long bones is one of the offending bumps. Both bones should be the same length and they're both supposed to be straight.
So anybody have any really good liquor they can send my way?
help?
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