April 2001

Sunday, April 1st
Last week was a quiet, uneventful, wonderful week. Except for a small incident on Wednesday.
Jake came home almost every day with a big grin on his face. Every day was a good day for him. And Friday was so good that his grin broke into laughter.
He is starting to talk about the future. What he wants to accomplish. He has nothing definite planned yet but has a lot of ideas. Before the accident he wanted to pursue a career with the DNR. He loves fishing, loves animals, loves being outdoors. The DNR sounded like the perfect job for him. Through the first two years of high school he wanted to study veterinary medicine but changed his mind a while ago and focused on the DNR.
Last Wednesday a weird thing happened. The medical van dropped him off around 5:00 p.m. and he rushed into the house. Said he could hardly see and that his Foley must be extremely full. Well it wasn't. Then he said maybe he needed a can of food. And he was right on the second guess. As soon as I poured the food into his tube his vision returned. I don't understand these things. I'm trying so hard, but I don't understand. Why would not having food effect your vision? And, by the way, he was not overdue for a meal. He had the usual 4 cans before he got home, and sometimes he goes for an hour or so after he gets home before he needs/wants another can. We can only figure out that he must have had an extremely hard workout at Froedtert that day. But why that would effect your vision... I don't know.
Because the weather was so beautiful yesterday (52 and partly sunny) Terri postponed his bath until today and instead they went outside so Terri could move some of the stones that are heaped in a huge pile in our driveway. They have finally thawed so now we are attempting to spread them on the lawn and the small strip of land between the sidewalk and the street. The mud was so bad there that the bus driver had a terrible time getting Jake in and out of the school bus.
Friday, April 6th
Yesterday I was upstairs when Jake rang the doorbell. (his way of saying he needs something). When I got downstairs he was sitting in his chair and laying into his bed. It seems he attempted to retrieve a hand towel from the floor and discovered he couldn't get back up. He slowly turned his power chair around and rang the bell, which is velcroed to his bed railing, with his head. Of course after that I was very apprehensive every time the bell rang. Didn't know what to expect.
It got me thinking about how he will ever be able to live alone. He can't transfer himself (yet) to his bed/chair/etc. He can't even pick up a towel off the floor. He says it's a matter of building up his strength... told me not to worry. God tells me the same thing so you'd think I'd listen. :)
Last night he spent 2 hours in his manual chair. I know, you're saying: SO? Well, he doesn't do that. He rarely goes into his manual chair. Maybe once or twice in last 4 months. So last night was a milestone. He is very proud that he stayed in that chair for 2 hours. Says he's going to do it again tonight. Let's pray this becomes a habit.
late Friday afternoon
Well, I discovered the impetus for Jake's 2 hour stay in his manual chair. He has a very good friend, Dennis. They have been buddies since about the 4th grade. On Wednesday Dennis asked Jake when he was going to start using his manual chair. Well, Jake gave him the usual answer "tomorrow". It could have been "later". That's his other stock answer. Thursday was "tomorrow" as far as Dennis was concerned. Jake got in his manual chair. And wonder of wonders, he didn't melt! He didn't disappear! He didn't fall on the floor! He enjoyed it!!! He was able to get closer to the computer. He retrieved his own email. AarrHHH! Sometimes I could just pop him one.
Saturday, April 7th
Yesterday Jake got home from Froedtert at 5:00. He was tired. His arms hurt because he was in the manual chair for 2 hours (during PT). He was starting to sweat because of a wrinkle. I fixed the wrinkle first because that's important. Then Dennis and Katelyn arrived - wasn't 5 minutes after Jake got home. I went upstairs and within 5 more minutes Jake was outside, buzzing around in his manual chair! Laughing and having a ball. I don't know where the sore arms and tiredness went. :)
The other day I made something with bacon, don't remember what. But he smelled it and immediately accused me of making Hoppin' John. Well, I wouldn't do that because I know it's one of his favorites. So now that is what he wants for his first meal. Can you imagine? Hoppin' John for a first meal after close to a year of nothing by mouth. This month it is 8 months that Jake has not eaten anything. Usually my cooking does not bother him, even though the kitchen is right next to his bedroom. (that's because his bedroom is my old dining room). If we keep him full with cans of Pro-Balance, the cooking smells don't bother him.
I found two pairs of pants for Jake yesterday. It is difficult to buy pants for him because he can't have anything tight, and he definitely can't have back pockets, or buckles - anything that can cause rubbing on his backside. And if the pants are too loose there is the danger of wrinkles, which seem to bother him more than the average SCI person. He is 17 yrs old and would like to have something at least similar to what his peers are wearing. He has been living in sweat pants since the accident. Those silky exercise pants are not always the best for SCI people because of the sweat-factor. So hopefully one or both of these new pants will be suitable for Jake. If so, Terri can find appropriate material, and sew pants for him, using the pants I bought as a pattern. (she amazes me - she would rather use the finished product as a pattern versus buying a "pattern". She certainly doesn't get that from me. I can't even sew WITH a pattern). :)
I sure hope that eventually we will be able to adapt blue jeans for Jake to wear. They are/were his favorite.

Sunday, April 15th
Last Monday Jake stood up. First time since July 9th. He thinks he's grown a bit. Thinks he's taller. PT (at Froedtert) put Jake in a standing machine. He loved it. He lasted 10 minutes. That is probably because his PT person bet he wouldn't last more than 5. :)

He saw his therapy doctor on Friday. He's gained another 3 pounds. That puts him at 131#. It's amazing that someone can gain weight on a diet of 8 cans of ProBalance a day. No sugar, no fat, no meat, no nothing(or is it anything?) but ProBalance and water - all through his feeding tube. The doc says that when Jake hits 140# he's going to cut him back. Doesn't want Jake to weigh more than that. The doc claims that it is very difficult for quads to loose weight.

The doc also said that when Jake's trach site is closed he should not have as many respiratory problems. The trach hole will not close by itself. It was open too long. It will have to be surgically closed, and the ENT doc doesn't want to do that until they are through with any throat surgery and/or grafting that Jake might have. This is a sort of back-up in case they need an emergency airway.
Part of Jake's respiratory problems, mainly the coughing, result from phlegm accumulating in his trach hole, and also just because the hole is there. Sort of like when you have a hole in a balloon - it's very difficult to blow it up. It's kind of hard to cough when you have a hole in your throat. Sometimes when the trach hole gets clogged with phlegm he also becomes dysreflexic.

Jake's coughing got him in trouble on Wednesday. He was in the hallway at school and starting coughing. He drove right into the wall. Broke the right leg brace on his wheelchair, and injured his foot. When he got to Froedtert the therapy doc was concerned enough about Jake that he sent Jake to the ER. No fractures, just a contusion. But the x-ray showed osteopenia, a shrinking of bone substance (from non-use). That concerns me, but the doc says that's to be expected, and I guess it's logical when you think about it.

Terri managed to rig the broken wheelchair leg with wire and duct tape but we were lucky. The very next day a man came to school and fixed the leg for Jake.

PT would not put Jake in the standing machine on Wednesday or Friday because of the injury to his foot. He was very disappointed about that. That makes me very happy (that he likes the machine). It is very good therapy for him.

The shoes I bought for Jake last week were too narrow. He needs extra wide shoes, even though his feet are narrow. He cannot have shoe rubbing his foot. He had them on for about 1 hour and he started sweating - yep, another dysreflexia incident. Oh I hate that word. And a year ago I didn't even know what it meant. It means a cold clammy sweat, a violent headache, an immediate, extremely high blood pressure reading. And when you finally, frantically locate the source, be it a wrinkle, a tight shoe, a clogged Foley, anything that would cause minor discomfort for you or me - an immediate drop in blood pressure, the headache disappears (immediately) and his forehead becomes dry as a bone. This is difficult to believe until you witness it. Different things cause dysreflexia in different sci people. Unfortunately, Jake happens to be very sensitive to a lot of the causes.

Jake discovered a new freedom yesterday and promptly took advantage of it. He was bored, so he wheeled over to a friends house down the block and around the corner. They decided to go to Blockbuster - about 1 mile away, through town. So he rushed home to get fed, and to get some money. Then he, Erin, and her two little sisters trucked down to Blockbuster.
This is the first time he ventured out alone. First time he went any distance with friends - without Terri or me. I only had one apprehension. Last week he and Terri went for a walk and he drove up a driveway (from road to sidewalk) that was too steep for his chair and he almost tipped over. Only his tip bars prevented this. I was afraid he wouldn't pay attention and might attempt another steep driveway. But he assured me that he would be careful. Well, he's almost 18 years old and he will be on his own long after I'm history so I didn't worry. I voiced my concerns, and he acknowledged them.
He had a grand time and learned another lesson. He's got to make sure his chair battery is fully charged before he roams the city. He made it to our front yard before his chair ran out of "gas". :)

Terri had an exercise mat made for Jake. She made a cover for it. It helps Jake - especially on the weekends when there is no PT. His shoulders become very stiff and painful if he doesn't exercise every day.

Have a blessed Easter.

Sunday, April 22nd
Yesterday Terri took Jake to his friends house. Jake has allowed Terri to car-transfer him twice now. On Easter and yesterday. It is getting better. She only hits his face/head 50% of the time now. :) It's not really a "hit" - more like a "bump" or "squash". (he is tall, and the car is small).

This a.m. I discovered that he fell out of his chair yesterday and hit his head on the grass. He heard a crack (like when you crack your knuckles), and now the drainage in his neck hole is pink-tinged. So I guess we might be guests of Froedtert ER today. Terri is trying to page the spine doc now.

I'll post as soon as I know anything.

I'm supposed to tell you "I had a very great time yesterday. I started going down a slight incline which had a combination of grass, concrete and stones. When my front wheels hit this, I fell out. All I could think of was 'great, the one time my mom lets me go out alone and I fall'. The back of my neck feels very tender."

Jake has discovered that he can surf the www, even though he is paralyzed. Yes, we knew he could, but he didn't. Terri rigged up her writing tablet pen to his brace, and with a combination of that and a cordless keyboard that sits on his lap, he is becoming quite adept at surfing. In fact, my on-line time has been greatly reduced because of his surfing. :)

He is expressing an interest in this web page. Well, he's always been interested in it - I mean how I put it together. He has asked me how I do this, and so in the near future, he may post himself. He types very slowly so this will be an exceptional challenge for him. I guess for the rest of his life everything he does is going to be an exceptional challenge for him.

Monday, April 23rd
Yesterday Jake spent a quiet day - mostly at the computer. :) He is feeling fine. I assume the drainage is back to normal because Terri hasn't mentioned anything differently. He is at Froedtert right now for his usual Monday PT. That is why I can post. He isn't here - on Terri's computer - on the internet. :)

Wednesday, April 25th
I am computer-less as of yesterday. I cannot access my email, and I am using Terri's computer to write this update. Don't know how long this will be. My C and D drives have been reformatted, and I am in the process of reinstalling everything. Probably no more updates until I'm up and running. Even though my other drives were not erased, most of the programs depend on .dll's from the C drive, so most everything needs to be re-installed.

Jake saw the spine doc on Monday and the doc says his x-rays look great. No damage from the fall, in fact his neck is healing wonderfully. These x-rays much better than the ones done a few months ago. We are on a roll! :)