| Sunday, October 7th The medication Jake was given for his UTI wreaked havoc with his digestive tract on Tuesday. Not a good day for him. Aside from that, his week went well. |
| Right after Jake came home from the hospital - wow, it'll be a year this month - the job of ranging him fell into my hands. This was a job I enjoyed. It was something I could handle, and it really helped Jake. Well, slowly the ranging became less and less. He was going to PT X3 weekly; he became very active socially; he started volunteering, etc etc etc. |
| Well, we've started the ranging again. Yesterday I discovered that his
feet will not flex. That's when it occurred to us that ranging had been
relegated to the bottom of the list. Now it's been moved back up to the top.
I can understand why PT person at Froedtert had to stop Jake's therapy. The ranging was difficult because he kept spasming. He would spasm every time I tried to stretch his muscles. Thank God he can't feel those spasms. They are uncomfortable for him, but he can't feel the pain of his muscles moving. Remember charley-horses? My thinking is that his spasms are just like charley-horses. |
| On Wednesday night Terri, Jake, Dave, Kathie, Larry, Kris and Mark went to Albaneses Roadhouse for dinner. That is the restaurant that held a benefit for Jake last February. That benefit helped Jake get his van. They haven't gone before now because Jake couldn't eat. The food was outstanding; they plan to go again this Thursday to celebrate Dave's birthday. |
| Sunday, October 14th Last Friday I decided to make blt's for supper. When we cook bacon we always make the whole package, then store what we don't use. It makes cleanup easier as you only do it once. Well, Jake came home in the middle of my cooking. Of course the smell was very tempting for him. I would not have cooked the bacon if I had known he would be wheeling in so soon. He has been told to eat only soft foods for a while and I consider bacon to be in the hard-food category. Well, I gave him a little taste. He said he'd chew it into very small pieces. |
| I put the plate of cooked bacon on the kitchen counter and then went to my computer for about 15 minutes. When I came back downstairs the kitchen wastebasket was on the other side of the room - I had put it near the bacon as I used it to dispose of the grease - and the pile of bacon had mysteriously decreased! |
| I went into Jake's room (if you recall his room is next to the kitchen, my old dining room) and there he was, Mr Innocent, his arm nonchalantly laid over the tray on his wheelchair, calmly watching TV. He smiled, but wouldn't talk. (the only time he doesn't talk is when his mouth is full, and even then he usually can't be quiet). I slowly lifted his arm, and surprise! - I found 4 pieces of bacon. |
| It is difficult for Jake to maneuver in our house because we have not widened any of the doors yet. The living room and his bedroom are connected by French doors so that is the (easy) limit of his freedom in the house. He can, when motivated, get into the kitchen and backroom. It is a very tight fit. I have a broken cabinet door to attest to that. Jake has to be careful that he does not hit his hand when he goes through those doors. And once in the kitchen, he needs all the room there is to turn around - he has found that it is easier to back out. |
| We plan on widening the doors. We have some nice plans. They include building a small addition in the back so Jake can have some privacy. We also want to raise the floor in the garage, run heat out there, and make that an exercise room for him. |
| Last Thursday Jake, Terri and Dave again visited Albanese's Roadhouse. Again they had a wonderful time. The food is delicious. |
| Jake has had much less coughing problems since the trach was sewed shut. He can also raise his voice louder than before. This eases his mind as now we are more likely to hear him if he is in need of assistance. We still use the doorbell technique but that runs on batteries and sometimes it refuses to work. If (when) we build on we will run wires for an intercom system. |
| Sunday, October 21st Jake saw the sci doc on Monday in regards to his spasms. The doc has not ruled out the Baclafen pump but wishes to experiment with different dosage levels of Jake's current meds to see if that will work. I agree with that. It probably is a necessary step with insurance also - to prove 'medical necessity'. So Terri is dispensing Jake's anti-spasm drugs, plus the Valium, at different dosages in three day increments, of course as the doc instructed. I hope this works. I also hope we can eliminate the Valium. |
| A few days ago he started feeling mildly dysreflexic. We suspect another UTI. So we must ask the urinary doc for an order so we can get Jake's urine cultured again. At least we can do that at our local hospital and avoid the trip to Froedtert. |
| Jake loves the workout he gets at the YMCA. He goes every Tuesday and
Thursday. He feels extremely exhilarated after a workout. He also has
increased the strength in his arms. It took him by surprise the other day.
When he is in bed he maneuvers his arm under the side bar and pulls to
stretch. He pulled as he normally does and moved more than he expected. Jake
has a trainer at the Y that puts him through many arm exercises. Then he
ranges Jake's legs. We are working on getting Jake into the pool. I also wish Jake could go to the Y more often but that is the only time available. It is a busy place. |
| Sunday, October 28th Jake had new wheels put on his power chair this week. He had worn the old ones down so much there was barely any tread left. The new wheels make quite a difference in performance. The manual chair is never used. That disappoints me but it's his life, not mine. |
| We took another urine specimen to be cultured last Thursday. We have not been informed of the results yet. Usually we must call the urologist to inquire about the results, then he prescribes an antibiotic. It's probably proteus again, that seems to be the bacteria Jake attracts. |
| Jake's spasms don't seem to be under control yet. We have been experimenting with drug combinations, of course with the doc's knowledge and assistance. I have noticed that he doesn't call in early a.m. as much as he used to, but the day spasms are still pretty wild at times. |
| We still haven't heard from the Courage Center, but we were told this may take some time. |