Sleeping is a pretty basic thing. Everyone does it, no matter their abilities. It's one thing that I never thought I'd have to worry about for Javy and it was a surprise to find out that I did need to worry about it. And it's not really the sleeping part I have to worry about, Javy has no problems with the sleeping part, either. The question is where does he sleep?
You see, he can sleep on a normal bed but there's always the risk that he'll fall off or climb off (which he does). In the past, I've just put the mattresses on the floor. That way if he falls off then it won't hurt too much. But then there's the problem of getting him in and out of bed. Javy weighs over 75 pounds and he's over four feet tall. That is a recipe for a bad back.
So last fall, I thought I was being clever when I asked the Shriner's doctors for a prescription for a hospital bed. I found out from the local medical store that insurance pays 80% of the cost for a hospital bed. The sales rep took the prescription, got my insurance info and then she said she would call and let me know when everything was approved. I walked out of the store, kind of puzzled... Don't I get to pick something out and let them know what we need. I wasn't expecting an Ikea warehouse, or anything.... Maybe, at least, perusing through a catalogue.
Nevertheless, my optimism did not falter. A few weeks later, Gammie's Homecare called and wanted to set a time up for delivery of the new hospital bed. We were in transition ourselves so I asked if I could wait until we got set up in our new home. Meanwhile, my mom convinced me to go back to the store and at least see what they would be delivering. And yep, it was a basic hospital bed. I told them that this would actually make it more dangerous for my son because he would climb over the meager railings. I told them that I was hoping for something that raised up and down for easier transitioning from bed to chair or floor but with more substantial railing. Something like this: http://kayserbettenus.com/ida.html. Nope, they didn't sell those. I asked about getting some other kind of railings for the bed that they did supply. Nope. So I cancelled that order, no use going through all the trouble for something more dangerous.
I researched some of the pediatric beds and they actually do take insurance and even give step by step instructions for getting insurance to approve them. I was really excited, I thought I could circumvent the system. I called Javy's nurse and she readily agreed to help. She called the company, but they don't sell directly to patients, it has to go through a medical supply store. And guess what, Gammie's Homecare isn't one of them. The nurse found a couple of companies on other islands that they would sell to, but these stores didn't come to Kauai. (Javy has the greatest nurse because she did all this research on her own.)
So we were back to putting the mattresses on the floor and at least if he fell off, then he wouldn't fall too far. But then the centipede incident occurred and I learned quickly not to put mattresses on the floor here. I have two twin beds that came with the house. I set them up side by side in my room and created this huge bed. Javy began sleeping in my room, with the mattresses off the floor.
It finally occurred to me, what the heck, are children with special needs not entitled to a good nights rest or at least their mommies. So I asked a couple of mommies of kids with limited mobility issues, who'd been at this for awhile. My survey results were as follows: Their children slept in the same beds as them. It was kind of crushing because sleep is at least one thing that Javy can do on his own.
On the other hand, I actually found that I slept better with Javy next to me. I was sleeping without worry, I didn't wake up at odd times in the night to check if he'd fallen off or been carried away by centipedes or changelings. It was kind of nice. However, the novelty soon faded as I began waking up to feet and a head in my back. And I just wanted to be able to turn a light on and read before bed. It's the little things, I know.
In the meantime, we began fixing up Javy's room. I put rubber flooring down in his room, painted and sealed the room better. I'm proud to report that Javy is now sleeping in his own room. I put one of the twin beds in his room and he has not fallen off. I still wake up every now and then to take a peak, but it's worth it. He's independent.
You see, he can sleep on a normal bed but there's always the risk that he'll fall off or climb off (which he does). In the past, I've just put the mattresses on the floor. That way if he falls off then it won't hurt too much. But then there's the problem of getting him in and out of bed. Javy weighs over 75 pounds and he's over four feet tall. That is a recipe for a bad back.
So last fall, I thought I was being clever when I asked the Shriner's doctors for a prescription for a hospital bed. I found out from the local medical store that insurance pays 80% of the cost for a hospital bed. The sales rep took the prescription, got my insurance info and then she said she would call and let me know when everything was approved. I walked out of the store, kind of puzzled... Don't I get to pick something out and let them know what we need. I wasn't expecting an Ikea warehouse, or anything.... Maybe, at least, perusing through a catalogue.
Nevertheless, my optimism did not falter. A few weeks later, Gammie's Homecare called and wanted to set a time up for delivery of the new hospital bed. We were in transition ourselves so I asked if I could wait until we got set up in our new home. Meanwhile, my mom convinced me to go back to the store and at least see what they would be delivering. And yep, it was a basic hospital bed. I told them that this would actually make it more dangerous for my son because he would climb over the meager railings. I told them that I was hoping for something that raised up and down for easier transitioning from bed to chair or floor but with more substantial railing. Something like this: http://kayserbettenus.com/ida.html. Nope, they didn't sell those. I asked about getting some other kind of railings for the bed that they did supply. Nope. So I cancelled that order, no use going through all the trouble for something more dangerous.
I researched some of the pediatric beds and they actually do take insurance and even give step by step instructions for getting insurance to approve them. I was really excited, I thought I could circumvent the system. I called Javy's nurse and she readily agreed to help. She called the company, but they don't sell directly to patients, it has to go through a medical supply store. And guess what, Gammie's Homecare isn't one of them. The nurse found a couple of companies on other islands that they would sell to, but these stores didn't come to Kauai. (Javy has the greatest nurse because she did all this research on her own.)
So we were back to putting the mattresses on the floor and at least if he fell off, then he wouldn't fall too far. But then the centipede incident occurred and I learned quickly not to put mattresses on the floor here. I have two twin beds that came with the house. I set them up side by side in my room and created this huge bed. Javy began sleeping in my room, with the mattresses off the floor.
It finally occurred to me, what the heck, are children with special needs not entitled to a good nights rest or at least their mommies. So I asked a couple of mommies of kids with limited mobility issues, who'd been at this for awhile. My survey results were as follows: Their children slept in the same beds as them. It was kind of crushing because sleep is at least one thing that Javy can do on his own.
On the other hand, I actually found that I slept better with Javy next to me. I was sleeping without worry, I didn't wake up at odd times in the night to check if he'd fallen off or been carried away by centipedes or changelings. It was kind of nice. However, the novelty soon faded as I began waking up to feet and a head in my back. And I just wanted to be able to turn a light on and read before bed. It's the little things, I know.
In the meantime, we began fixing up Javy's room. I put rubber flooring down in his room, painted and sealed the room better. I'm proud to report that Javy is now sleeping in his own room. I put one of the twin beds in his room and he has not fallen off. I still wake up every now and then to take a peak, but it's worth it. He's independent.
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