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Poker Queen. Janet cleans up at Poker Night. #TSJ

With the idea of trying to figure out why Janet complained of a sore throat the last two nights after taking her Dilantin, I stopped by for a chat with her doctor before going out to Connect today. Without seeing Janet and being able to examine her throat it’s hard to say for sure what’s going on but based on the fact Janet seems fine the rest of the time and is not bothered by trying to swallow any food or drink her doctor suggested trying to flush the capsules down with a good portion of water. When I reminded her how hard it is to get Janet to drink anything she suggested yogurt or something like that. Depending on what the capsules are coated with it is possible they would cause some irritation if not completely swallowed. The doctor was surprised to hear that the neurologist has not contacted me yet and will follow up on that as she feels it’s important Janet sees him soon.

Janet had just finished her sing along session with John and was having a bio break when I arrived. She smiled then started crying complaining that “I don’t belong here, there’s no way I’m going to go”. Realizing she was talking about going to the bathroom I told her it’s a good thing to try before nap time and I walked over to her desk and back. By the time I got back she was peeing and laughing about it. She was having a good day so far. Jess said she showered well and toileted well this morning then had a really good workout in the gym. Janet said it was fun singing with John, even singing the Titanic song. Glad I wasn’t there for that one. I had to lay down with her for a few minutes until she fell asleep then I went to talk to nurse Jen and Tez.

I filled Jen in on the sore throat thing and she agreed the water and yogurt would be good things to try. Tez was pleased with my report on Janet’s pool experiences and will come with us next Thursday to see for himself and give me some pointers on how to improve the routine. He says it’s important to work on the big things like kicking and floating and standing as opposed to little things like range of motion stuff. Just prior to speaking with Tez I got a surprise call from Dr. McCann’s office. There is a spot open next week where he could Botox Janet’s legs! I am still in the process of trying to reduce our Pharmacare premiums so I was worried that if we did the Botox now we might be paying too much if Pharmacare changes in our favor. I asked Tez for his opinion and he feels that although there is no guarantee Botox will work for Janet the window of opportunity for having success with it is closing so the sooner the better. Her actual appointment is July 10th and that is too long to wait by passing up next week’s chance. I called Pharmacare and they said they would reimburse any difference after the review of my application is complete. So Janet will go next Tuesday for another round of Botox in her legs and then the focus of her PT routines will be on stretching them as much as possible.

After her nap I told her the good news about the Botox and she immediately started to cry. Seems she remembers all the needles that treatment requires and does not want to go through that again. It took about a half hour to get her calmed down enough to have the scheduled Skype chat with her mom. Mary/Gaga was a big help in giving Janet a sense of relief about the Botox and as the evening wore on I had Janet share the positive news with everyone she saw so as to build it up as a good thing. By dinner time she could talk about it without crying.

Setting the table and helping to make mushroom gravy built Janet’s confidence tonight and her and Garrett seasoned a chicken for roasting tomorrow as well. That kept her focused for half an hour and feeling useful. Maybe she was too confident as both Garrett and I failed to convince her to go to the gym tonight. She caught on to the fact that if she agreed to play poker she wouldn’t have to go to the gym so that’s what she chose to do. And a good call it was. Janet has no clue how to play the game and with all the chatter going on around the table and a new dealer who didn’t really know what she was doing it was not the night to try and learn. But it was fun as I helped her along. Each time she won a hand she got a massive smile on her face and by the end of the night it was down to her and Brandon left in the game with Janet holding at least twice as many chips as him. Because of the time we agreed to play one hand all in and Brandon won so he got to chose from the prize box but Janet couldn’t have cared less as she was still playing with the colorful chips. She helped me put them away and I think she enjoyed stacking them in separate colors as much as she did playing the game. That was a fun and different experience for her.

With water and yogurt ready I gave Janet her Dilantin before she started her nightime routine thinking the longer before she lays down the better too. There were no problems tonight at all. She took the capsules first try each time and drank a good amount of water along with a few spoons full of yogurt. No complaints or coughing or anything.

Praying for a restful night and an active day tomorrow.

Madness Monday. Nice comeback by Janet. #TSJ

For the first time in a while we had to use an alarm to wake up this morning. I wanted to make sure we had lots of time to get to the KGH pool and wasn’t sure how Janet would be feeling today. I showered and got dressed then woke her up. She was not totally pleased with me but gathered herself and got on with it. I didn’t even have to nag her about drinking her water as she was sipping regularly as soon as I served it. Janet took her morning meds well and we were out the door on time.

In the nice warm water, Janet loosened up quickly and after a while got some decent leg kicking action going while I held her afloat. Her best skill in the pool today was standing by far. She was able to go up and down, using her left leg mostly, the farthest I’ve seen yet. I’m still not convinced we are doing things right but we make the best of it. Janet also excelled at floating on her back today. She’s either gaining more confidence in the water or more trust in me and allowing herself to relax more. At one point her head was back almost covering her ears with water and her eyes were closed and I barely had to support her. Not sure if there’s any physical therapy to be gained there but it was nice to see her so relaxed. She didn’t list to the right as much as last time either. No idea why.

Music Therapy with Stephani was next and Janet seemed pleased to see her and didn’t hesitate to get started. The best task I’ve seen so far from Stephani is when she has Janet play some sort of instrument. There are drums and shakers etc. and Janet really enjoys all of those and keeps a pretty strong beat going.

I took Janet home for lunch since we were so close and decided to let her nap there as well. She gave the usual mad battle against the nap with the usual two hour sleep to follow. I actually had to wake her so we could get to Connect in time for dinner. Janet seemed perfectly happy to be back there and was warmly greeted by everyone. Dinner was timed really well as Janet finished just as the basketball game was about to tip. What a great game it was! Janet missed halftime and the first twelve minutes of the second half as Curtis took her to the gym. We talked about going during the first half of the game and Janet laughed sometimes and got mad about it sometimes. Then when it came time to go she completely gave in and “happily” went. I suggested only a fifteen minute stretch but Curtis put her through a full workout and Janet never complained about it. She did say afterwards that it was “terrible” but she said it with a smile.

We watched the end of the game with Janet asking to stay and watch the trophy presentations afterwards so bedtime was later than usual. Her nightime routine went well until minutes after taking her Dilantin she once again tearfully complained of a sore tongue/throat. The pain subsided ten minutes later and she was relaxed and sleepy as I said goodnight. I will talk to nurse Jen and Janet’s doctor about this tomorrow as I have no idea what’s causing the discomfort.

Praying for a night of rest and healing, to know why Janet’s throat was sore and for an energetic day tomorrow.

Lack of Sun Day. Restless night gets the better of Janet. #TSJ

After a great day yesterday today was a downer right from the start. Janet went to sleep last night just before ten, happy with the day’s events and accomplishments. When I went to bed right around midnight, she was awake and couldn’t get back to sleep until after 2am and we have no idea why. She was giggly but in a way that suggested frustration, she was tired but unable to settle down for more than a few minutes at a time. Once, she was so determined to get up that she actually got herself about eighty percent sitting up in the middle of the bed. She was quite proud of herself but I convinced her to lay back down. She finally did fall asleep after I racked my brain to see if we had done anything out of the ordinary to trigger this restlessness. I can’t think of a thing.

Wanting to let her sleep but also wanting to go to church today I got up and started getting ready as best I could without waking Janet. She woke up around 9:30 and seemed ready for the day. Breakfast went well and out the door we went. Janet was dialed in during the service and I thought we’d have a pretty good day. Then we got home and the slide began. It was an ugly day here, cool, cloudy, rainy. These days never had a good affect on either of us and with both of us being tired the effect is greater. Lunch was delayed as I helped a gentleman get our bike rack that his sister bought from us into his car then even after choosing to have bacon and eggs Janet decided she doesn’t like eggs. She helped make herself a half a quesadilla and ate most of that but was losing energy fast. It was three o’clock by this time so down she went for a nap that I had to wake her from at 5:45 or things would just be going too late tonight. They did anyways.

Janet never had much energy today and her speech was poor for most of it. She did help with dinner and ate all she was given. There just wasn’t a lot coming back from her as I tried to talk to her or get her to do things. She did play ball with the dog so that was a good diversion for fifteen minutes. I struggled all day to get water into her and that may have played a role in all this. Her transfers were fine for the most part but not as strong as yesterday. We watched The Voice together this evening and she enjoyed that and reacted well to some of the contestants and laughed at the coaches when appropriate. Janet did share with me a frustration at not being able to remember things from earlier in the day. I asked her what we were doing after she finished her glass of water and she said “going to church”. When I told her we went this morning she got upset that she couldn’t remember that. I recapped the last two days with her and it seemed like she remembered some events from Saturday but nothing much from Sunday at all.

By the time I kissed her goodnight tonight it was after eleven, mostly because she was enjoying The Voice so we watch both episodes I had recorded then after all the routine nighttime stuff Janet complained and got quite upset that her throat was sore. She couldn’t tell me exactly what was going on but my feeling is she’s getting a cold. I tried water, no improvement, then a little honey, no improvement but enough of a reaction to calm down and go to sleep. She is snoring loudly now as I write this and hopefully stays that way till we have to get up to get ready for swimming.

Praying for healing and rest tonight and lots of energy to fully participate in tomorrow’s activities.

Simple. A simply enjoyable day. #TSJ

I’m starting to really enjoy Saturdays, especially ones where we have no set agenda. This one started nice and slow with both of us waking up at 7:15 and agreeing it was way too early so back to sleep we went. Well Janet went at least and I hung out beside her just relaxing until she stirred again just after 8:30. That was a little more reasonable so we started the morning routine and by the time breakfast was done it was past 10:30. Janet was cheery and chatty throughout and chose to help me make a pot of chili afterwards that we could let simmer all day and enjoy it whenever we wanted tonight while we watched basketball.

Janet did a good job chopping a couple of very irritating onions, had a little trouble with the peppers as they seem to have tough skins for her to break and was happy to stir things together. This was Janet’s fist attempt at using our new One Touch can opener and she had immediate success after a very brief demonstration. I’m really happy that worked as it’s one more thing she can do on her own.

With the chili cooking we moved to trying on pants and things Janet had elected to keep during the purge but we weren’t sure if they fit. Most didn’t so it looks like a shopping trip is in the works. Sticking with an unintentional Mexican food theme we had quesadillas for lunch, something Janet could participate in the making of. I need to find a way for her to grate cheese. She can’t seem to push hard enough against the grater we have. Suggestions?

Nap time came a little late as we took a long time eating lunch and listening to music but after getting up Janet was nicely refreshed and patiently sat in the sun while I cut and painted her nails. Jess told me the other day that they aren’t allowed to cut toe nails in case they break some skin. That’s a new one on me but I’m happy doing it anyways. We went with bright yellow today in honor of the Spring sunshine and to help cheer on Michigan in their basketball game against Syracuse. It worked!

Today was a nice simple, relaxed, fun and productive day. Janet did very well with her standing transfers, the best yet, with some really strong pushes once I got her most of the way up. Which is not near all the way up of course, but all the way for her. It seems a little like we are starting all this over again and in some ways we are. I think previously, I was able to lift her to a straighter position and therefore thought she was standing more on her own. I now realize she wasn’t doing much of the work then but now I’m starting her off then waiting for that push from her before making any further move. Sometimes it doesn’t come right away and I have to sit her down and try again but more often than not she gives a very definite push and raises herself up noticeably to where I’m mostly just balancing her rather than holding her up. That only lasts a second or two of course but I think she’s learning each time she does it and is gaining a little confidence. Overall I think she gained a lot of confidence today as she accomplished many small but important tasks.

Praying for a restful night and lots of energy tomorrow.