Winter 2005
| 12-18-04 Jake is trying out a new chair! He is very excited about this. It is a mid-wheel drive chair. |
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| I hope someone is there when he has his first test drive. (to wipe him off the wall). |
| I know he will adapt to the new chair. He is very strong-willed. Look at the last four years. But, I relate this (sort of) to learning to drive a stick shift. |
| Six days and he will be home! The whole family will be together. This is wonderful! |
| and I will get my hug! |
| 12-18-04 3:00 p.m. Jake called a little while ago. In jest I asked him how many times he ran into walls with his new chair... "two times so far". |
| 12-23-04 Jake fell out of his chair yesterday. Not his new one - the old one. The van dropped him off for a dentist appointment. He had been dressed very warmly, and the van was warm. He drove out of the van into frigid cold. He blacked out, ran over the curb and wiped out. He is ok - has lots of aches and pains. His upper arm is very sore. Some people in the dentist's office witnessed this and came out to help. It took 3 people to get him back into his chair. |
| And then he had to spend >45 minutes getting 3 teeth drilled! |
| We are now trying to decide what Jake should do in the future to prevent this from happening again. This was early afternoon and he had not eaten anything yet that day. Easy suggestions are: eat something (duh!) and ask the van driver to remove some of Jake's outer clothing while in the van, or turn the heat off. Oh, and wear his seat belt! |
| As I write this (3:00 p.m.) Terri should be pulling into Jake's parking lot. She left about 9:00 this a.m. I am not optimistic about them returning any earlier than 4:00 or 5:00 tomorrow - maybe later. |
| 12-24-04 5:00 p.m. Jake's home! |
| 12-26-04 We had a wonderful Christmas. Everyone was here. Jake was in his chair for about 4-5 hours. Then he needed to get off that ulcer. So Terri tossed him into bed and he and I talked for a while. |
| There are two new pictures of his ulcer on the photo page if you wish to view the progress. They are graphic. My stomach takes a dive every time I look at them. |
| When you are not physically with him you tend to forget just how dependent he is on other people to help him with such simple tasks as pulling the sheet a bit so his hips are resting a little differently. When we sleep we move 50-60 times during an 8 hour period. Jake can't do that by himself. Yes, he can hook his arm around the bed rail and pull, but that won't move his body. |
| Our doorbell trick wouldn't work this time. When Jake came home from Froedtert we had to devise a way that he could call us if he needed us. We purchased a door bell and placed the chime box on the stair landing. We put velcro on his bed rail and placed the doorbell button on the velcro. This worked very well... except one horrible night that the button fell and he called us for hours - we didn't hear him. |
| Well, on Friday we discovered that the door bell chime had lost it's ring. We have two phone lines into the house (dating back to dial-up connection) and Terri put a phone with the second number on Jake's bed. When he needs her he calls her on the phone. |
| Our house is a basic two story (old - circa 1920) house with attached garage. I renovated the garage into a bedroom for Jake so he is rather distant from the upstairs bedrooms. This was intentional so he could have a semi-private life of his own. |
| As you know, he then moved to Minnesota but at the time of the renovation his future plans were totally unknown and rather bleak. The Courage Center showed Jake his potential and changed his future. Now all he needs to do is get that ulcer healed and enroll in college. |
| He's been trying to do that for two years now, and I think we can see light at the end of this tunnel. |
| 01-02-05 Well, Jake is back home again. He was very happy to see his own bed. The visit was wonderful, but very trying for him due to that ulcer. The nurse said that she could tell he had been on it too much, but it looked ok. I was very happy about the smaller size. It seemed that it would never shrink, but now, finally after two years, it is getting smaller. |
| 01-07-05 Jake has another UTI. He is on two antibiotics, one orally and one via injection. He was very sick two nights ago. Either with the flu or reaction from one of the meds. |
| 02-06-05 They have discovered that Jake has an enlarged spleen. This could be the reason for his nausea, lower back, and abdominal pain. He had an ultrasound last Friday and hasn't heard anything yet. |
| He also has two new ulcers on his butt due to a bad seat cushion. I guess you need to do tests to see how a person sits and then form the cushion accordingly and that wasn't done. |
| He is again losing weight - he eats sporadically. We are trying very hard to stress the importance of a well balanced meal in relationship to the healing process. |
| 02-11-05 Jake's spleen is enlarged because he has mono. There must be one or two other illnesses/afflictions that he has not had yet. |
| 03-03-05 Jake has decided to have the surgery to close his wound. He is hoping that at the same time they with correct the recurrent hip dislocation that is causing him so much pain. They can't plan this until the mono is gone. Tentative date for surgery is the middle of March. |
| He said he's feeling better. His spleen seems smaller and his appetite has returned. |
| They have told Jake to plan 2-3 weeks in the hospital and then 2-3 weeks in a nursing home... all that time on total bed rest. That is why he has been resisting it so far but realistically, he has spent most of the last two years of his life in bed due to that ulcer so this should be a piece of cake. |
| He wants to get on with his life. He wants to go to church. He wants to enroll in college. Can't do any of that from bed. |
| 03-05-05 Terri is visiting Jake this weekend. She says "he's thin". That means he's skin and bones. When he's real thin (like now) the port for his anti-spasm meds, which is implanted in his abdomen, sticks out. It's rather gross and he loves grossing me out. |
| Well at least his cupboard will be full. Always is when Terri visits. Now we have to get him to learn to direct his aides so they will fix him some good meals. So far it isn't happening. |
| 03-06-05 Terri got home mid-afternoon. At least 3 times she said "Jake is very thin". I can't imagine him any thinner than he was at Christmas time. The mono is history and his appetite is returning. Now he must make intelligent food choices. Since he finally agreed to the surgery it would be a big blow if they postponed it due to malnutrition. |
| I think (I hope) he finally understands that part of his ulcer problem is due to poor nutrition. Even if he has the food in his apartment it is sometimes difficult for him to direct his aides in the preparation of his meals, sometimes due to poor communication, most times due to lack of appetite. |
03-14-05 Jake decided to get a hair cut. He has clippers at home. He told his friend Bou to use a certain # and she did... but with the wrong attachment. Don't worry, it'll grow back. :) Now he's unsure about the surgery again. His nurse claims that the wound will heal without going under the knife and Jake desperately wants to believe that. I guess we'll have to wait and see what happens.
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