Botox

Kicking In. A relaxing day as the Botox takes effect. #TSJ

A sleep in Saturday for sure as Janet opened her eyes at 7:30 then happily went back to sleep until 9:30. That set the pace for a relaxing day hanging out at home. She chose her traditional breakfast which we enjoyed together with no idea what we would do next. Fortunately Janet asked to watch TV while I went to shower and while searching for something to watch I noticed an NBA playoff game about to start. I thought they started Sunday so we scrambled to the computer to fill out our brackets in Raju’s annual Pool. We got our picks in just in time and Janet enjoyed the process making some good choices in winners but I think she has too many series going the full seven games. Anyways it’s something she enjoys doing and we had basketball on in the background all day.

The only scheduled event of the day was a Skype chat with Leslie that went well despite some technical challenges. Heather checked in with us later on and it was good for Janet to catch up with both of them. I’ve had to resurrect my role as physio therapist while Janet is at home so we can maximize the potential of the Botox and when I stretched her legs this afternoon I noticed an improvement right away. It was even more noticeable tonight as I was able to get her left leg down to almost where we used to be able to get it in the 4B days. Janet is not too happy that we are doing this stretching stuff at home but she was OK with lounging with her legs up in her wheelchair. Her standing for transfers was quite good today as well and I sense a little confidence coming back there. That increase in confidence saved her from a total meltdown after seeing some pictures of herself from her KGH days. I had just shown her photos from Raju and Laurel’s wedding and at the end of those there were a few unflattering pictures of Janet and she got a little upset but kind of accepted that she’s come a long way. She asked me to turn them off which I did and she was on the verge of really crying about it but held it off. A nice improvement.

Since the day started late, nap time was late too but Janet did have a brief one that allowed her to do a good job making a salad to go with dinner tonight and she really enjoyed watching The Voice together especially since I made popcorn for us. All in all it was a very relaxing day at home just making things up as we went along. One highlight for me came as we were doing the nightly rundown of the day and as I mentioned the first couple of things we did Janet chimed in with “and we picked our teams”. Love my sports junkie and nice to see a little short term memory action.

Praying for a restful night that brings lots of energy and awareness for tomorrow.

Botox. Janet puts up with the pain. #TSJ

Brian was kind enough to drive Janet in from Connect for her appointment with Dr. McCann at KGH today. I met them there and we had time for a walk in the sunshine before seeing the doctor. Janet said some things looked familiar to her but not the beach that we spent so much time at last year. She was still happy to be there today though and agreed it was a beautiful day.

Our visit with Dr. McCann was really good, Brian sat in with us and Dr. McCann allowed me to ask a lot of questions while he was preparing to stab Janet. He was surprised to learn that he had prescribed a low dose of Baclofen for Janet way back in the 4B days but doesn’t want to change it now so we can accurately monitor the effect of the Botox. Makes sense. He feels it’s a good time to try and wean Janet off the Ritalin and ordered her noontime dose discontinued for the next month and we’ll see how Janet manages. I think she’ll be fine. My concerns about the Dilantin were supported with the caveat that until Janet has gone seizure free for six months you shouldn’t take her off the drug. He said someone may do it after three months but I think that’s too risky and will keep hoping we can see the neurologist soon for his opinion. Dr. McCann concurred with my concern about the side effects and agreed Dr. Adams would know more.

Janet was understandably tense as she lay waiting for the “little pokes” from the Botox needles and she squeezed my hand as tight as ever as Dr. McCann used four needles on each leg. She recovered quickly and was laughing with us on the way out as Dr. McCann suggested she would soon be able to kick him as payback for what he’d done. We should start seeing results in a couple of weeks with the peak effect occurring in about a month. Dr. McCann will see Janet then to assess the situation.

I gave Janet the option of going out for lunch or going home, she chose home as she was just too drained to do anything else. Once there she had a good little play time with Nash then helped make thin crust pizzas for lunch. She spread the sauce on both and put all the toppings on including slicing the grape tomatoes with the most precision yet. She’s still a little weak on the cheese grating part so I’ll have to do some research on how to help her with that. Janet continues to gain confidence in the kitchen.

There was no argument at all about nap time today. I just wish it could have happened sooner as it wasn’t until after 2:30 that she could lay down and she had to be up just after four for a Skype chat with her mom then get back to Connect for dinner. The sleep did her well and the Skype chat went well with Janet giving surprisingly good answers to a few questions. We were impressed to learn that Keith has bought an iPad and look forward to an improved Skype experience and other cool things in the near future.

Curtis had Janet’s dinner waiting for her when we got to Connect and she devoured it then very obediently went to the gym with him after digesting for a little while. Curtis spent over an hour with her and ran her through every routine possible including standing at the stripper pole. On the second attempt he let go of Janet completely to show her she was doing it all on her own. She smiled. Hopefully this is the start of an improved attitude towards the gym and I made sure to point out that her standing transfers to the toilet were not good at home today but quite good after her workout in the gym. For once she didn’t roll her eyes or snicker. Starting to believe maybe?

After enjoying the last of her Easter chocolate we tried making a little video using an app I learned about today called Keek. It let’s you shoot thirtyfive second videos on your phone and Tweet them instantly from the app. I will be using this to do any breaking news stories on Janet and or a fun highlight of the day type of thing. I couldn’t get Janet to say all her lines for tonight’s installment so I posted it with her laughing for about fifteen seconds as that’s what she did everytime it was her turn to talk. It was a great way to end a very positive day. If you want to see the video and all the future ones please follow me on Twitter @larrylatour. You’ll also need the Keek app which you can get here.

Thanking Jesus for a productive and positive day and for the good people that are on Janet’s team. Praying for lots of rest tonight and maximum effect from the Botox.

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.

The Hangover. Janet recovering from the weekend? #TSJ

As usual Janet was hanging out in the living room when I got to Connect this afternoon. She was lounging in her comfy chair, legs up, pillows in place, all she needed was a nice cocktail and she’d be set. She agreed it was pretty comfy and that’d she’d even closed her eyes a bit. Jess was there to help with the report of the day so far. Janet had trouble getting started in telling me what happened and couldn’t remember what she had for breakfast. Pancakes. She remembered going to the gym but not what she did there. Garrett told me it was a tough session with lots of tears. Janet refused the Shuttle and said her legs were sore and Garrett found the range of motion on her right shoulder to be less than previous. I found her legs to be quite stiff today and am hoping its just from her overall state of being as she seemed quite tired all day. That’s as much of a report as I got as Janet surprised me by agreeing to lay down for a while. She did so for about an hour but didn’t sleep much.

With a little more energy than before her rest time Janet got up and we went to see nurse Jen about her former peg site. On my way out to Connect today I got a surprise call from the KGH Rehab Pool saying Janet has been accepted into a program there for the month of March. Since I was on the road I couldn’t get details and I was really excited and shocked at the news. I figured there would be a lengthy wait list to get in there and when Dr. McCann’s office called this morning to say they had sent in the referral I thought it would be a few weeks before anything happened. What do I know. The down side is I’m not sure Janet has healed enough from the peg tube removal to go “swimming” and Jen isn’t sure either. We agreed to have another good look at it tomorrow. Janet is a little blasé about using the pool but I think she’ll like it once she starts. Dr. McCann’s office also said he is very supportive of more Botox for Janet’s legs but officially can’t get her in until July. His lovely assistant Pam will try and get Janet in before then. I have confidence in Pam.

Janet was able to set the table for dinner but needed quite a bit of help as she was tiring again. She gobbled up her dinner though and that gave her energy to Skype with Laurel afterwards for almost a half hour. Her voice was reasonably loud and she mostly responded appropriately to Laurel’s questions and comments but had trouble telling her own stories with a lot of them referencing Jews. The only association I can make for this is from the Academy Awards show when Mark Whalberg and “Ted” were telling Jewish jokes. I didn’t even think Janet was that awake during that part of the show but I have no other idea as to how she got onto that tangent. She was petty funny though. Funnier than “Ted”.

We watched a little YouTube and that was about it for the night. Praying for rest and healing and a hard working productive day tomorrow.