Sunday, February 17, 2008

When the Glass is Half Full

I remembered the face, the smile as broad as can be, the face of pure joy. It was the first time Dear Son was in a hot tub. It was as if Dear Son had died and gone to heaven. He never wanted to leave, he never wanted it to be over. He lay in the water, floating in his father’s arms, his face toward the sky, as the sun beamed down upon him. I had never seen him that relaxed or that happy as he was that day. But it was this face, that I remembered, when he smiled today. It was the same one that I saw when he was in the hot tub.

He had been vocalizing lately when I started his feeding this morning. The Pedia Sure pumping through the tubing like an electronic heartbeat, did not seem fast enough. By mid day, he started vocalizing again and looked up at me when I was in the kitchen. Dear Son, seated in his rocker at the dining room table, was listening to the radio. His head lie on a towel on the table to catch the drool that pooled near his mouth. Whenever I went near the kitchen, his head would come up off the table, as if to signal that he wanted something.

I took out his glass, a plastic cup with a squiggly straw built in the side, the only cup he had ever mastered. This cup, was the same one they taught him to use in elementary school. I had marveled over the fact that they were able to teach him to use this cup with the straw….I mean, how do you teach someone to suck up when they have very little oral motor control? You might be able to get him to suck a bit and then he never seemed to have enough suction to get the liquid all the way up through the straw. You’d have to tilt the cup so the liquid would be half way up so that when he’d suck, he’d get some liquid. I think they worked on this for at least a year and to this day, it remains as one of the greatest contributions the school system has ever made in his life.

I only have two of these cups remaining in my cabinet. The rest were tossed out and I saved another two in a cabinet I use less often, hoping I might need them again someday, knowing full well it will never be true. I suppose that would be called an emotional attachment to an object, something Professional Organizers like myself, should frown upon. If an item is not used, not loved or not needed, it should be tossed. Some rules are meant to be broken.

I pulled the glass out and filled it with some iced tea. He seems to like that on occasion, to wet his mouth. He doesn’t drink very often, as his swallowing ability has deteriorated, but he still enjoys it. I bring the glass over and sit next to him at the table. He smiles and I tilt the glass toward him. He falls to the right repeatedly and I try to support him while I tip the glass to help him get a sip. He chokes on the liquid then coughs a lot. We try again and when it happens a second time, he stops. I used to use a thickener however once he stopped eating and went to g-tube feeds, I never went back. The occasional sip, was just that, occasional.

I was taking lunch out of the oven when he looked at me again. I figured he was hungry so I quickly chopped up some food for him and mixed it with a vegetable and mashed potatoes, his favorite. His face lit up as I brought the plate over to the table. By now, he was smiling and laughing he was so excited. His face was exactly the same as it was in the hot tub, so many years ago. It was the face of pure joy. I put a tiny bit on the spoon and gave it to him. He was smiling and laughing so hard that I had to give him some verbal reminders to settle down so he could chew and not choke. There wasn’t any chewing required really, but I needed him to manage it slowly so he could swallow. Dear Son didn’t care and quickly took his face and tried to smash it into the food on his plate. That was his way of telling you to get the food in faster, to hurry up. That’s the way he ate dinner for as long as I can remember. He kept trying to smash his face in his food and I kept trying to stop him, since I didn’t want the food all over his face and all over the floor. He didn’t care. He kept smiling. I placed a small bit on the spoon again, thinking maybe I didn’t get enough in his mouth the first time, and gave it to him. Dear Son continued to smile but the food just sat in his mouth. I knew then, that he wasn’t able to chew it, eat it, or swallow it. Dear Son didn’t care though, he continued to smile and laugh, his eyes were lit up like it was the greatest day of his life. He stayed like that for at least ten minutes, the food never leaving his mouth. He never chewed it, he never swallowed it, he just tasted it. And it tasted good. I couldn’t get over how excited and happy he was just to get a taste. Not a bite, just a taste. A taste of real food.

Fifteen minutes later, the food came out of his mouth. I wiped it up and threw out the paper towel. I took the Hoyer Lift, attached the sling to it, raised him up and took him into his room. I lowered him onto his bed then removed the sling and hooked up his lunch. The two cans of Pedia Sure went into the bag and I turned on the pump. It would take one hour and forty five minutes for the 16 oz. to get into his belly to fill him up. But a taste, well a good taste lasted ten minutes.

As for me, I guess I’ll chalk it up to another lesson learned. Some people see the glass as half empty, some people see the glass as half full, and Dear Son, he’s sees it running over the top.

Wednesday, February 13, 2008

The Easy Button

It was 7:37 a.m. when I woke up. I had that panic when you know you overslept. I keep my alarm clock 35 minutes ahead so I was trying quickly to do the math. It was really 7:02 a.m. which meant the school bus was already outside, waiting for Dear Son. Dear Son, was sleeping soundly in his bed and there wasn’t any way we’d make the bus. It takes one hour to get him ready for the school bus and that’s if I pack his lunch bag and spare clothes the night before, which I always do. I went outside and informed them to go on.

Inside, I opened the phone book. There must be an easier way. My choices were to let Dear Son stay home from school or take him myself. Without a wheelchair van, I can barely manage getting him into the car. It takes everything I’ve got to lift him in there and if I am wrong, he’ll end up on the ground.

I opened the phonebook to see if there was some sort of wheelchair transport to take him to school once he was ready. The only listing was the local transit system bus. I called the phone number, but of course, we’d need to fill out a 12 page application, and an in-person interview prior to getting approved, and then I’d have to call a day in advance to get service and that’s if everything checked out.

I fell asleep on the sofa the night before. I woke up at 1:20 a.m. and quickly gave him his midnight meds. I usually give them at midnight on the dot but know I have an hour or so either way. Once he got his meds, and his diaper was changed, I stayed up and did some internet surfing and checked my e-mail. I went to bed at 2:30 a.m. and then couldn’t get to sleep until around 4 a.m. hence the oversleeping.

I decided to make the attempt to get him to school. I left my back brace on and got him ready and took him out to the car. I backed the car out of the garage, leaving enough room on the passenger side to get him in. The ground was icy making it risky. Hopefully, my footing would remain secure and his footing as well. Although he can’t weight bear, I can usually tilt the wheelchair totally forward and then swing him into the front passenger seat. I have to wedge my knee between his legs to do this otherwise his feet tangle when I swing him into the seat. I usually count to three before I lift him and ask him to help. If I am lucky, he’ll try to stiffen up for a second and I can make the transition. If he’s not able to do that, he’s on the ground. There is no in-between.

I got in him into the car and broke the wheelchair down into it’s parts. The wheels and the steel base they were attached to, went in the trunk and the rest of it in the back seat. His seat, the back of his wheelchair, the armrests, lunch box, backpack, sling and handlebars were all there. Sweating, I got into my car for the drive to school. In fifteen minutes, I could do this all over again. At least, I was 50% done. At school there would be help, but mainly once I got him out of the car since the male aide at school can’t lift him out of the car by himself. He’s just not used to it. To top it off, there was freezing rain coming down. Could it get any harder?

Once Dear Son was at school I went home to make some more phone calls. I learned that in addition to the transit bus, there was a bus in my county that would also take Dear Son places within a six county area for $1 per mile. I called the office, picked up an application and filled it out on the premises. To do this, we also needed to fill out another form, which required a State ID card.

I wasn’t worried about the State ID card. Our state offers an ID card but also offers a Disabled Card that identifies the person as disabled. It requires a physician’s signature, which I already had. I thought in lieu of a driver’s license, Dear Son should have an ID card, in case something happened to him. After all, he was sixteen now. And the Disabled ID card seemed perfect. If he were in an accident, they would know he was disabled. A few months back I printed the form and got the required signature so I thought I was set. Not.

To get this particular card, I needed that form but four other pieces of identification for Dear Son. One of which was Dear Son’s “written signature.” Well, Dear Son doesn’t have any use of his hands or arms so he doesn’t write. Not only that, he can’t hold a pen, hold a glass or hold anything in his hands. Nothing. There weren’t any other options listed for the disabled or those that can’t write, just a list of acceptable pieces of identification.

One of the other requirements was proof of residency. They wanted a utility bill in his name, or a lease or any of a list of bills in his name. Well, Dear Son lives with me, so we had none.

I attempted to call my local Secretary of State’s Office. Surely there was an oversight. They can’t expect that “all” disabled people can write or live on their own. The only number was a big city number and I waited on hold forever and finally hung up.

We’ll get a letter from the physician and hope that will suffice. Once that is done, we’ll get the Disabled ID card, then send in the form for the local wheelchair transit, and hopefully get approved. Once that’s done, we can go to the grocery store on a weekend or any time he’s home from school for a week’s vacation. Currently, we don’t go out of the house at all when he’s off, since it’s too risky and too hard to get him in/out of the car. I’d love to use it to go to the Arboretum this summer now that the cicadas from last summer are gone.

That was my morning. By noon, I had taken him to school, researched our options, drove across town and filled out forms, came home and made calls and did some internet searching for the Disabled ID card. I still had a long to do list of things to do for my business.

I sure wish there was an easy button. People need to think this stuff through more carefully. It shouldn’t have to be this hard to get a ride to school. I did what every other parent has done in their life, I overslept. I just wanted an easier way to get him to school.

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Note: I am sorry for the delay in posting. I had to take my pc in to the shop and didn't get this posted prior to taking it in.

On a different note, it's been about three weeks since Dear Son had the botox injections to decrease his saliva. It has worked amazingly well! His main issue was that the nighttime choking was so severe, I was afraid he would aspirate. Since the surgery, he hasn't had any episodes as severe as prior to the botox. While he still has days where he has difficulty controlling his saliva, and he still drools, his biggest issue is resolved. He is also sleeping much sounder and much better now that he's not choking through the night. I am sleeping much better too since I don't hear him choking and gasping for breath. Yay for botox!
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