EEG

Stop and Go. A back and forth week for Janet. #TSJ

Early on in this journey I referred to what Janet and the rest of us were going through as a roller coaster. That analogy still applies but thankfully the peaks and valleys aren’t quite as dramatic or long lasting as they used to be and Janet’s rate of ascent is steady.

Her most obvious gains continue to be seen in the gym and during physical activities in general. Janet’s reluctance to go to the gym continues but her resistance to it is less dramatic and I’m hoping she’s starting to notice the positive results herself. I’m with Janet mostly for her bike riding sessions and can report that each day she sets a personal best for distance travelled. Today she made it .71 miles. Her rides are thirty minutes long with the focus on building speed in the hope of being able to add more resistance at some point as that would mean a significant increase in her leg strength. Janet’s tolerance for the standing frame isn’t improving much from what I’ve seen with those sessions maxing out at forty five minutes to an hour.

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There is tremendous value to it though and we saw a great example of that over the last couple of days. Monday night I was unable to get the frame set up optimally for Janet so she had a very short session. When I got her into bed and stretched her legs out as I always do they were very stiff. Tuesday night with Curtis’s help we got things set up nicely and Janet had a good long session standing nice and straight. Her goodnight leg stretch was a hundred percent better and I made sure she knew it. Since the installation of the stripper pole in her room Jess has been working with Janet on transferring from bed to wheelchair and vice versa using the pole.

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As Janet gains strength she’s getting better and better at the transfers. I still do a pivot transfer with her but no longer have to carry her weight as much as I used to and she can let herself down into her chair using the arm rest. My arms and back are liking this improvement. The team continues to work with Janet on sit to stands at the parallel bars and I’m noticing nice improvements in her ability to get up out of her wheelchair because of that work. All this exercise is paying off for sure and to prove it, Janet for the first time I know of rolled all the way over from one side of her bed to the other today! This may not sound like much but when you consider all the muscles you need to use to accomplish a move like that its very impressive for Janet. It wasn’t long ago that laying on her tummy would start her crying and she pulled off today’s maneuver with relative ease. High five!

Personal bests are also being reached in the pool with Janet now able to swim one length on her tummy. We haven’t yet figured out how to get her to breath so she can swim longer but its pretty exciting she can go that long holding her breath and propelling herself that far. Her right leg continues to mostly do its own thing in the pool and is impeding her progress for sure. I’m looking at ways to help her regain control of it but don’t see anything obvious. Janet’s attitude towards the swimming sessions remains positive but she is much more excited about hot tubbing, even asking a couple of times this past weekend if we could go. I feel truly blessed to have the ability to provide that for Janet as it is so therapeutic in so many ways. I’ve noticed and increase in the range of motion for her right shoulder and arm as well as her wrist and attribute that to the hot tub. Walking in the pool remains a challenge due to the uncooperative right leg but we practice each session and Janet is still willing to work hard at it. This past Monday after a good walking session I wanted her to swim on her back a little but she couldn’t. Seems she totally forgot how and it wasn’t till the next session that she figured it out again. Weird.

So far I’ve told you lots of positive things so let’s do some negatives now. Janet’s chronic constipation got to her again this past weekend and we ended up with a nice long visit to the ER because if it. The doctor was unable to get anything to move that night so put Janet back on the Resotran that had just run out a couple days prior. It works great and Janet is for now going regularly but the problem is not solved and we continue to wait for this illusive “urgent colonoscopy”. Restoran is not a drug you want to be on long term as your body can become dependent on it and you may not regain control yourself ever and that would not be cool. Pray for the colonoscopy and a visit to the GI unit soon. KGH treated us well that night although slow and I found it a little surprising to be driving home in the daylight at 4:15am. This past Tuesday we finally had our meeting with Dr. Adams the neurologist. He ordered an EEG for Janet just prior to our appointment with him and it was really cool to see how that is done. Janet had twenty nine electrodes on her head as they measured the various electrical discharges from her brain. Dr. Adams confirmed there are some epileptic discharges occurring so he is keeping her on the Dilantin probably forever. That’s not the news I was hoping for but at least now we know and we also know there is no other drug out there obviously better than Dilantin. My concerns have diminished as Janet is making cognitive gains and the side effects have diminished since she got into a therapeutic range with that drug. Dr. Adams described Janet as high risk for another seizure but is confident the Dilantin is working as she’s been seizure free for five months now. He does not see a need for Janet to visit or have an EEG on a regular basis but made himself available on an as needed basis. I liked him and was impressed he remembered us from five months ago.

Back to the fun stuff. On Friday we enjoyed a nice lunch visit with Jim and Nancy Church, long time friends from North Vancouver, always good for a laugh and intelligent conversation.

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We also had a voice call with my youngest daughter Brittney who lives in Edmonton and I was impressed with Janet’s conversational skills during that call. She was loud and articulate and seemed genuinely pleased to hear from Brittney. On Saturday we realized that only two of the dresses in Janet’s closet fit her and neither is wedding appropriate so Laurel has agreed to shop around for something Janet can wear to her and Raj’s “wedding” here in July. Janet is excited to finally be a part of her daughter’s nuptials.

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Sunday started late after spending the night at KGH then we had to try and get some Resotran for Janet and Jen from Connect was a huge help with that. While we were out there I put Janet through her paces on the bike and standing frame and she did very well at both considering how tired she was. Back at home she really wanted to finish watching Les Miserables after it was interrupted to go to the ER, so we did and Janet was surprisingly tuned in to it. She even caught a line that I missed. Impressive. We both were in tears by the end of course but thoroughly enjoyed it. Monday was a great outside day. We had lunch outside after swimming then went for a really nice walk that evening at Connect. Janet was able to play I Spy much better than the last time we tried and really enjoyed the warm evening. She went to bed very giggly in her new bed that night. Tuesday was Skype day with calls to Mary Gaga, Andrew and a special one to Heather on her birthday. Janet impressed me by explaining to Heather how sorry she was for not getting her a present yet and that she is getting one soon. She did that all on her own and with great conviction. Nice.

The week ahead is setting up to be fun and busy. I’ve switched Janet’s swimming from Friday to Thursday so we can go to Nanaimo for the weekend, then there is the usual Monday swimming followed by a trip to the dentist. I think I’ll have a very tired Janet on my hands by Monday evening. Praying for continued physical healing and cognitive gains and thanking Jesus for all we’ve been blessed with.

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