September 2001

Monday, September 3rd
Well, Terri and Jake made it back from Minnesota yesterday. Jake is extremely happy. The Courage Center is a great place. We are hoping that it will not take too long for him to be able to go there. It depends on the Courage Center having an opening and Title 19 (the money). Also they are in the middle of remodeling and are under-staffed right now.
In the mean time we are corresponding with Whitewater state college. They have excellent facilities for the handicapped. First we must find out what courses Jake must take to qualify for college. Since his senior year (agenda) of high school wasn't developed for pre-college but for graduating, he will have to take a few classes for the 'college-entrance' credits. This probably won't be until 2002 or 2003 since the Courage Center may last as long as 7 months.
The Courage Center teaches the handicapped to reach, then go beyond, their physical limits. If Jake progresses, length of stay (usually starting with 3 months) will probably be extended. If they feel that Jake will not benefit further from their teaching, Jake will come home.
Jake (and Terri) discovered that traveling is possible. It was a sort of release for Jake to realize this - he didn't think this was an option for him anymore. I've been talking about returning to Gettysburg for over 6 years now and I told Jake that I wanted him to come too. Well, after the accident he pushed all traveling out of his mind. Now this door is open to him again.
Well, Jake's friends are going back to school this week. This is going to be an adjustment week for everyone.
Sunday, September 9th
Terri was told that Jake has the opportunity to earn college entrance credits at the Courage Center. That was very good news. We're still waiting to hear from them about when (if) Jake can go there.
Last week I got Jake with a supersoaker. During his bath, he does his best to see that I get as wet as possible. He sits in a chair and I'm usually behind him, holding him so he doesn't fall. (we do this in his bedroom and the chair is in a kiddie's wading pool) Well he manages to cup water into his hand and then he flips it up and over, right onto me. The wetter I get the happier he is. :) I've been threatening to get him with a supersoaker but he knew I'd never go out and buy one just for that. Well, Dennis left his supersoaker over at our house. :)) I had never used one and didn't know how to expel the water. That's when Jake piped up and said "everyone knows you have to pump it to get it to work". Soooo, thanks to Jake I was able to get him... good. No, I was not mean. The water was warm tap water, and I aimed at his tummy and legs. And it wasn't for long. That thing is very heavy.
I'm afraid it was a rather boring week for Jake. He still goes to the nursing home in the a.m. to visit, but then there is the afternoons. All he has is me and the TV. Most of his friends are back in school - either college or high school.
We think it will probably take 3-4 days to get the door of the van fixed. ($2,500 - wow!) I thought Jake would be house-bound then (except for local excursions with his power chair) but two days ago Dennis and Katelyn managed to put Jake into their car and took him to visit friends. It was time-consuming but do-able.
Terri and I have not attempted to transfer him to a car since his neck wound has healed. That was the worst part of the transfer. We always managed to hurt his neck. Of course we also usually hit his head because he is so tall. Since we got the van there has been no need to use a car.
Saturday Jake discovered that an arcade has opened downtown. It is not wheelchair-accessible so some of this friends put up boards by the back door so he could roll into the building. It's sort of a lose-lose situation with his chairs. If he uses the power chair, he is too heavy (about 450#) for anyone to bump him up stairs. If he uses the manual chair friends could bump him up stairs, but he'd never get to the building in the first place because of distance from our house. This might change with endurance, but you have to remember that Jake only has biceps, and slight wrist movement - that's it. Nothing else.
Jake is thinking of applying for a job at two different places in Oconomowoc. It's kind of difficult to make any sort of plans at this time because of the uncertainty of the Courage Center situation right now.
Thank you for your prayers.

Sunday, September 16th
Our hearts and prayers go out to the people of New York City and Washington DC. And for the families of the heroic passengers of the plane that crashed in Pennsylvania.

Please join us in praying for these people and for our leaders in Washington DC that they make wise decisions.

Tuesday, September 25th
Jake and Terri are at Froedtert today for pre-op testing. He finally gets that trach hole closed this Friday. He is nervous and excited about that. Baths will be easier because we won't have to worry about accidentally getting water in his windpipe. I thought all they did was simply suture it shut but Jake said he was told they cut the edges first and then pull together and sew. We'll find out on Friday. It's a same-day procedure. He'll be home by night.
Jake has a job! Every Friday he works from 3:00 p.m. to 10:00 p.m. at the new arcade in town. He is a sort of host - 'calm-keeper' - bouncer?.
He still volunteers at the nursing home - that's in the mornings. In the afternoons he is going to start going to the YMCA. He will get a workout (of sorts) on some of the days. They also would like him to volunteer to take new-comers around - sort of give them a tour of the building.
The workout is vital - he is not going to any PT anymore. They (Froedtert) have stopped it completely, mainly because of Jake's spasms. We still don't have those under control yet, but they are better than before.
We have heard of a pump that is implanted in the patient's abdomen. The tube that is attached is directed to his spine so that the spasm medication can work better. We are investigating that now. It involves another surgery but if it works as they say, it would help Jake. The pump must be replaced about every two years. Once a month or so Jake goes to the phys office and they inject the medication into the pump. Then Jake controls the rate at which he receives the medication. Sort of like a pain-pump after surgery.
Right now Jake is not receiving the max dosage of baclafen and Zanoflex. If we gave him top dosage he would not be able to function mentally. Those drugs, along with the Valium, make the person very tired and drowsy. This is an oral drug. (or tummy-tube drug in Jake's case :). With the pump, it goes directly to the spine and therefore does not affect the brain function. Actually it sounds too good to be true. I'll keep you updated.
Jake has another UTI... or the same one he had 3 weeks ago. That darn proteus (bacteria) again. I found out that UTI's can manifest respiratory symptoms. I didn't know that. Last week wasn't a good week. We were constantly clearing his trach hole. When the hole is shut he will probably be able to cough up that stuff. Right now it just stays around the trach hole.
He is also leaking again. So he is NPO again. Every time this happens - like every 3 weeks, it's harder on him. For now, everything is going through his tummy-tube. From meds to water, and NOTHING in-between. The ENT doc is very frustrated. He can't figure this one out. Jake is healthy now - why does his esophagus keep tearing?
Jake has built himself a webpage. I have asked him to send it to me so I can post the link but so far I haven't received it.
Friday, Sept 28th
The surgery went extremely well. Jake has a neat smiley face on his neck now - with no big indentations. It's wonderful.
They were home by 2:00 p.m. The doctor told Terri the only problem he had was that Jake wouldn't stop talking. :)
Sunday, September 30th
Jake's surgery went well, they were home by 2:00 p.m. on Friday. He felt pretty good - he actually went down to the arcade for a while on Friday night (but not to work). Again on Saturday he felt fine - was gone most of the afternoon.
The ENT doc said Jake could talk as long as he held the trach site. If he had to cough or sneeze (you should see him sneeze - but that's another story :) someone should hold the trach site very tightly. He would not stop talking - and singing! Terri and I both asked him to please give his throat a rest - but he was adamant - said "the doctor said I could talk and I'm going to talk". This was uttered with determination and a tinge of stubbornness in his voice. The only time he wouldn't talk was when Terri was changing the bandage. hmmm... now that's a thought - we could leave the bandage off. It looks much better than I thought it would. There is no large indent in his neck. It is going to look nice when it heals.
Saturday afternoon around 4:00 p.m. he came home and he was not very happy. His throat hurt, his right ear hurt and he said it felt swollen. He was miserable. He was grouchy - which is definitely not Jake, and he was afraid. He said that this felt like the abscess from the fistula felt. Terri reassured him that this was not the same - that he needed to rest. He is on an antibiotic for prophylactic measures.
You may ask why we didn't force him to stay home and rest. Well, he is an adult now, and he needs to take control of his life. Like all 18 year olds, he must learn that he is not superman.