Sunday, Dec 31
As with all surgeries, the pain has gradually lessened for Jake. He has not needed the pain meds as much as he did a week ago. So the itching has abated also. Yes, we discovered that the Darvon that Jake has been taking since August makes him itch if he takes "2 every 4 hours". It never effected him when he was only taking an occasionally med. At least we think it's the Darvon. One day I must have spent the entire afternoon standing there scratching his face, neck, shoulders. Finally, in desperation, I gave him 1/2 of a benadryl. The itching eased, and he didn't react to the benadryl. So 30 minutes later I gave him the rest. The reason I hesitated to give him the benadryl is because of the plethora of meds that he is on is not conducive for an amateur of pharmacology (me) to be dispensing drugs, especially OTC drugs, without a physician or pharmacist's approval. A friend from work just had a surgery and he gave me the name of a pain med that might help Jake. It's less likely to cause itching. We researched it, and will request it for Jake's next surgery.

Jake has discovered the snow! I had to drag/coax him out the first day. I wanted to visit a house that is around the corner from ours. He has finally realized that I am serious about getting him outside - it takes considerable energy on my part to get his jacket on (getting it off is even more of a challenge). It amuses him to watch me struggle with his arms. I'm afraid that I'll accidentally bend an arm wrong and fracture it. Well, it occurred to him that if I go to all that trouble that maybe, just maybe, this is something that I really want, and that he will benefit from it.

He was apprehensive about the snow. He was afraid he would get stuck. (he did - many times) Many of the sidewalks were not shoveled. We did eventually make it to the house (no one was home). Then he didn't want to go back inside so we stayed outside for over 40 minutes.

The next day I again had to drag him outside. This time he took off down the sidewalk and promptly got stuck again. Every time he got stuck I pushed/dragged him - all the way to the other corner. Again no one had shoveled (it was still snowing). The hardest parts were the driveways where cars had made hard packed snow underneath. Well we made it back home. Then Terri came out and Jake wanted to do it again! So the three of us took off down the sidewalk, Indian style. We must have made quite a picture because we were all laughing as we were running, pulling, pushing.

When we finally got back inside he was exhilarated. His body was warm, even though the snow had melted through the blanket I had placed over his legs. We brushed off his chair as best we could and it still dripped for hours. The mat he was on was completely soaked. The battery in his power chair was almost completely depleted. Terri hadn't charged it for a few days, but Jake thinks another reason could be that he had to really juice it more than a few times when he was stuck.

We have concluded that he will not be able to maneuver in the snow alone. I don't know if he can learn to get out of these situations. It's like a car getting stuck. Sooner or later you must get out and push, or call a tow truck.

Yesterday, on my way home from work, I paid attention to the intersections. I though Jake and I could walk down to the library. I discovered that few corner houses shovel the sidewalks by the corners. Some do, but it only takes one house not shoveling to ruin it for Jake. We would have to go down a driveway, and then stay in the road.

When I got home from work yesterday Jake was outside waiting for me. :) Terri told him she was going out to shovel, and knock the ice off the house. He decided he wanted to go out too! If that little turkey balks today when I want to go outside I think I'll pop him. (lovingly of course :).

We were concerned because we have no gutters on the house yet. But we have come to the conclusion that even with gutters we would have an ice problem. Too much snow. Well, even in frigid weather that sun hits the ice/snow on the roof, and drips onto the ramp, and then promptly freezes. We never thought of that when we designed the ramp. We have a ridge of ice running all the way down the ramp. Every day we must break it up. Jake can make it up the ramp if the ridge is not too high but the ice sometimes swerves him into the railing. So I get behind him and literally pull back on one side, which keeps him going straight.

We are going to put another doorbell outside so Jake can ring it when he gets home from therapy, etc. The doorbell is remote. We discovered that the doorbell also activates his little fun toy from Klaas and Sue. :)

Monday, Jan 1, 2001
Yesterday my daughter Kathie had a Christmas dinner for us since we did not really have a Christmas this year. She lives about 3 blocks from us so Jake and I walked down. The sidewalks were all cleared but the corners, and the driveways were slushy - very difficult to drive through. So we went down the middle of the street. We could do that because it was a Sunday - not much traffic. When we got to Kathie's house Terri transferred Jake to his manual chair which she had taken down in her car. (she drove, I walked). Then we bumped Jake up the stairs. He took that pretty well, his neck is getting better each day.

We had a nice dinner. The best part of the day was when Jake asked to be transferred to an easy chair in the living room - not a recliner, just an average living room chair. He was in heaven! He sat up straight, didn't get dizzy - he loved it. This is the first time he's sat in a chair other than his wheel chairs since the accident. I haven't seen him that excited in a long time.

I guess you have to remember that we don't have a living room anymore. We don't have chairs and sofas, end tables, etc. They are all stacked on the front porch. When guests visit, they must sit in metal folding chairs, or Terri's computer chair, or Jake's manual chair. We don't have a room available to make it into a "living room". Eventually, we would like to build on in back of our house. But that is years off if it will happen at all.

Now Jake wants a chair. My mother has one on her front porch that is small enough to fit in his room, so I guess we'll work on that.

Terri gave Jake a taste of cranberries. I mean a lick - barely a taste. Of course she was suctioning red goo out of his neck for quite a while.

I'm a little concerned about the suctioning. The docs made us think that there would be a lot of it and it would continue unabated until his next surgery. Well, the suctioning is minimal - not much at all. I am a little worried that it is pooling again. Jake sees the ENT doc tomorrow; so we will learn if this is normal or not.

Saturday, Jan 6, 2001
Jake's neck is healing very well. The pain is now minimal. The ENT doc says the next surgery must be 3 months after this one, so that will make it around March 21st. The doc says the secretions/suctioning is as expected. I thought it would be more, like it was after his last surgery. So everything is ok on that front.

Jake is enjoying his therapy very much. He looks forward to going, and is very happy when he gets home. (meaning he is on an endorphin high because he exercised) His PT person is constantly giving him new goals, and Jake loves the challenge. He wants us to rig a bar on a spring from the ceiling so he can exercise his biceps at home. This is do-able (I think) so we are going to work on that.

He still enjoys getting outside. We go out on days he doesn't go to therapy. The sidewalks that were shoveled wimply (only top layer) are giving him trouble. They have turned to slush - he is constantly getting stuck. Good thing most people shovel it all away.

About 5-6 weeks ago Terri started giving Jake a half dose of Ativan every night. He seemed to be ok with that. This past Wednesday they decided to stop the dose entirely. He slept marginally that night, Thursday night he had leg-position problems. Don't know (yet) how he did Friday night as it's still very early :). Maybe he will need some sort of muscle "controller" all his life? If so, it can't be a narcotic.