brain

Planning #TSJ

Janet was happily eating a bowl of what looked like soup to me when I arrived at Connect this afternoon. Turns out it was actually chicken pot pie, or at least it used to be. Hopefully we are nearing the end of the pureed diet. Mary Lou dropped by the table and gave a very positive report on Janet’s Speech session for the day. They have been working towards getting Janet to turn up the volume and part of that process is being able to string at least five words together on one breath. Janet is now doing that and Mary Lou is quite happy with her progress. Mary Lou was standing and talking to us on Janet’s right and I noticed a couple of times that Janet turned her head way to the right to look at Mary Lou. I have noticed Janet more aware of things on the right side lately but have not seen that extreme of a turn before and asked Mary Lou if she is noticing more right side awareness and she said yes. Good news. Janet seems to be responding well to Mary Lou and I think she’s got a good program in place for her. Once Janet was finished her “soup” I took her for a bathroom break before our meeting with Brian and team. The bathroom breaks have been going well lately, Lorne even took her for a successful one this morning.

Brian led us through the first of what will hopefully be a bimonthly team meeting. Janet’s ABI Coordinator, Terri was there along with Lorne and Jen, the house manager. It was a good chance to get to know each other a little, especially for Terri as we had only spoken on the phone previously. She won’t be as directly involved as Cathryn was during Janet’s stay at KGH but once we get closer to Janet moving home then Terri will become the key player. One priority for this meeting was to come up with a rough schedule for Janet’s day. That schedule will be built around meal times and a quiet time in the afternoon. We know that Janet likely will not sleep and will not want to go to bed during that time so Jen came up with a good idea of putting a lazy boy type chair in the living room and having Janet chill in it from two ish to three ish each day. Worth a try. We also agreed to let Janet try and sleep at night with no rails on her bed. Connect will procure a couple of fall mats and once in place the experiment will begin. I’m confident HouDieno will exit the bed at least once but I believe she is more aware of her surroundings now and will learn from any such fall. Janet says she doesn’t remember any of her previous escapes but accepts her nickname for what it’s worth. I can understand Connect being nervous about doing this but I really don’t see how else Janet will progress if we don’t give her the chance. There are a few things to discuss with Tez before finalizing Janet’s schedule and hopefully we can do that before the weekend. Brian says he has feelers out for a music therapist for Janet and has a couple nibbles. I’m really hopeful we can get something going that way as I believe Janet will respond very well to it. Today’s meeting was a good foundation builder and I am confident Janet has a good team looking after her.

After another successful bathroom break I took Janet to the gym for a good leg stretch and some work on the Shuttle. She set a personal best today going for thirty two reps at two bands of tension, then six reps with three bands and thirteen reps with one band using her right leg only. High five! She required a fair bit of encouragement during the routine as she keeps saying things like “it doesn’t matter” and “so what” when given the reason for doing something. I’m confident these responses are coming from a lack of confidence place rather than an unwillingness to get better place. She managed a big smile after doing the thirty two reps as I reminded her she only did sixteen the last time.

Dinner was fun tonight as Janet reluctantly chowed down on pureed Spaghetti and all the guys were BBQ’ing steaks and Leanne was making baked potatoes for them. The chatter was good and that helped Janet plow through her mush. We played a game of Chutes and Ladders before bed and Janet won easily. She had a lot of trouble spinning for her turn no matter where I placed the spinner. She said she could see it fine but couldn’t make her hand do it. I noticed a few times today that she was trying to get her right hand involved in things and she did try and lift it to spin a couple times. I want to think this is a sign of something coming back to her right arm but won’t go there yet. She asked if I would read some Slow Dance to her in bed and four pages into it she was snoring. It really is an interesting book, she was just played out from a busy day.

Praying for rest and healing tonight, a good workout in the morning and a bright and ready to swallow strong Janet for the afternoon.

Back to Business #TSJ

According to Garrett, Janet had a great first half of the day eating a good breakfast then going with him to the gym for a workout on her right arm and shoulder. Garrett says that went really well with good range of motion from her arm and shoulder. Carl did some Speech with Janet and he says that went well for about twenty minutes then Janet seemed to get stuck repeating a couple of words and seeming tired. She did tell him she’s married to Larry and has daughters named Heather and Laurel and a son that starts with S. Two out of three ain’t bad. When I arrived this afternoon Janet had just fallen asleep in the living room watching tv with the staff. She woke up five minutes later, smiled and laughed that she was sleeping but agreed to go lay down in bed for a rest. By the time I got her to her room she was denying she agreed to rest and being quite defiant about it. I laid her down anyways and joined her, ten minutes later she was snoring and slept for an hour and a half. I think the busy weekend took a bit of a toll on her.

When Janet finally woke up we went to the gym and had a strong leg workout. Her tone in some ways seemed less today so maybe the day off yesterday helped? I spent a lot of time stretching and am using all standing transfers now so I didn’t have her stand at the stripper pole today. I did get her on the Shuttle and she did her best yet. Sixteen reps at two bands, five reps at three and ten reps with one band using her right leg only. She still got all upset at the end but seemed to quickly realize the good that machine is doing once I explained it to her.

We were late for dinner on account of the workout and had the table to ourselves. Janet ate well and was happy to head back to her room afterward to play the Sesame Street matching game. I put the cars on the easel Brian had brought for her and that seemed to improve Janet’s ability to see them. She did very well, getting through about two thirds of the deck before tiring out. We then listened to a Stuart McLean story which brought us to bedtime.

A solid day for Janet and good for her to get back to a little routine around Connect. Praying for an active day of learning tomorrow and restful and healing night tonight.

Gourmet Puréed #TSJ

When I got to Connect this afternoon I asked Janet how her day was so far. She was happy to report that she “got up this morning”, had a smoothy for breakfast and did not go to the gym. I thought that was pretty good reporting on her part. Turns out she did go to the gym but shortly after arriving a new resident with some behavioral issues came in and disrupted things enough that Janet started crying so Garrett took her back to the “house”. She had some Speech therapy before Rikki made her a colorful lunch of green beans, carrots, cottage cheese and pork. I was surprised to hear about the cottage cheese as Janet had thought it pretty disgusting at KGH but apparently lapped it up today.

Our chat took place in the living room while waiting for Brian to come and meet with us. We talked to him in detail about the wheelchair and now have a plan in place to get Janet’s chair set up ideally for her so I can actually buy the darn thing. Brian offered a few accessories intended to make Janet’s day to day routine easier. Most of them I found to be too compensating and Brian agreed that we need to have Janet learning and re-learning to do things rather than having something do it for her. One useful item is a short easel that sits on top of her desk at an adjustable angle and allows a book or the iPad to be positioned in a more useful way for her. Some of the items were food related and we agreed to leave food prep out of Janet’s itinerary until she is cleared to eat real food. That brought up the question of the swallow X-ray. Connie had emailed today saying KGH has yet to receive the doctor’s order. I phoned her the doctor’s office right away and was told she had some things to do to it before sending it off. Translation, she forgot about it. Grrrr. We had a good long talk with Brian and Janet was very patient throughout and near the end she went off to explore the living room a little. She returned with a pillow on her lap so I invited her to a pillow fight. She thought that was great.

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Janet went for a shower before dinner and we hung out in her room for the few minutes we had before heading down to eat. Rikki made another colorful plate for Janet, carrots, mashed potatoes with a little yam in them, cottage cheese and chicken. The best looking meal Janet has had at Connect and apparently a tasty one too.

Since Janet missed out on the gym this morning I took her in for some leg stretching and got her on the Shuttle as well. I wasn’t able to set it up as well as Tez had it but Janet still got a decent go at it. She was reluctant to try standing so I tricked her a little bit into doing a standing pivot off the Shuttle. She did really well once I got her started towards standing.

Bob was leading a bunch of the residents in a poker game tonight and Janet enjoyed watching for a little while. She didn’t understand the game of course but liked the loud action. She also really enjoyed watching some YouTube before bed and after being tucked in agreed that today was a good day.

Praying for rest and healing and a productive day tomorrow with positive news about the swallow X-ray.

Month Eight #TSJ

Day 246 was a good one for Janet. Lorne and Garrett worked with her this morning in the gym and with some Speech. She didn’t fall out of bed or her wheelchair and ate well. When I arrived she was waiting in the living room to go back to the gym with Tez. The guys were updating Janet’s chart and agreed that she needs to be on a regular toileting program. I talked to nurse Jen about that later on and she will develop a routine so Janet gets plenty of opportunities to go to the bathroom. Today was much better in that regard. Lorne and Garrett also started making up a bunch of side dishes for Janet to eat so she gets more vegetables and then the only thing that needs to be cooked at meal time is the protein. Food has been a challenge and will continue to be until Janet passes that swallow X-ray. No word yet as to when she gets a chance but the word has been put out to Connie to see what’s happening.

Janet failed the “who am I” test again but caught on quicker today for sure. We played an expanded version of it at bedtime and she did really well naming family members except her own kids. Usually she nails those easily but tonight it was everyone but. Still waiting for Tez we played a naming game on the iPad and Janet did reasonably well after getting two or three clues. She definitely knows things once she sees the word the problem is in pulling that word out of her memory bank on its own.

Tez was finally ready for Janet around three o’clock and he worked her pretty hard again. This was another training opportunity for the staff and Tez wanted to add some more hand, arm and shoulder exercises so there is a solid routine for those in the mornings and one for legs later in the day. Janet’s right arm continues to be nice and loose and Tez got some good range from it and even though Janet cried you could see improvement from last week. Tez got Janet to hold her right hand with her left and intertwine her fingers then lift her arms up high. Janet was straining hard to touch Tez’s hand about a foot and a half above her chest but she did it!

Getting Janet on her tummy was a challenge today as she was pretty worn out from the arm workout she had. Tez only kept her there long enough to get her doing some pushing back with her legs as he applied resistance. From there we got Janet on her knees again and she really seemed thrilled once she got there. It took a tremendous effort on her part as Tez had everyone back off on supporting her so she was doing almost all of it herself. Excellent effort.

The next stage in transferring for Janet is going to be using a circular pivot board that Janet will stand on, spin, then sit. We tried it a couple times and its still really hard for Janet to do on a regular basis but will be incorporated into her workout.

Finally Janet got to try the Shuttle Machine. This is a piece of equipment I noticed as something Janet could maybe use when we first toured Connect. As you can see from the video she caught on real fast. Using this regularly will really help Janet build some strength in her legs.

After all that it was time for a bathroom break followed by a Skype session with Mary/Gaga and Keith. Janet was able to converse reasonably well and I think enjoyed the chance to see and talk to them both. Dinner was a massive bowl of puréed spaghetti and meat sauce. It looked disgusting but Janet gobbled it up then enjoyed a desert of “yummy” pears.

It is truly amazing to think back eight months and see just how much progress Janet has made. Seeing her “kneeling” and “standing”, working on that Shuttle Machine, talking, laughing and eating well is truly a blessing. Thank you Lord for every minute I get to spend with her and for the healing you are bringing to her. Thanks to all of you for the prayers, love and support. #Team Save Janet

Mixed Monday #TSJ

Janet’s day started strong with a good breakfast followed by a full body workout in the gym with Danielle. Her right arm and shoulder continue to loosen and her legs continue to be pretty tight. Garrett took Janet to the clinic for a blood test to measure the level of Dilatin in her so Janet got to go out today as well. When I got in Janet was watching TV in the living room. I gave her the “who am I” quiz and she failed miserably calling me everything but Larry. She only clued in after she got her name right but she did name all her kids correctly and I think that’s the first time she’s done that without assistance. We played match the Sesame Street characters and Janet did better than yesterday but you could see her struggling near the end. Lunch was a bowl of soup and some canned peaches, unauthorized apparently but no one was watching. I left for a while after lunch to finish selling Cam’s car and Janet was going to hang out in the living room with some of the others until I got back.

While I was away Janet decided she wanted to sit on the couch so without any assistance she proceeded to do so. Of course she missed the couch and ended up on the floor. Danielle said she was fine, a little scared but mostly smiling. She tried again later but Bob was watching this time and prevented her from getting too far. I like the determination.

I came back to find her watching TV again so we had a little chat about her couch surfing and she seemed to get the fact she needs help. The staff of Connect had planned a fire drill for this afternoon so we all had to go to our respective rooms and wait for that to happen. The alarm is quite loud and annoying but it was good to see them all go through the exercise and from what I saw they have a pretty good plan in place should a real fire occur. I took Janet for a little leg stretch n the gym before dinner and managed a decent result. Once again she doubted her ability to stand then proceeded to do quite well at it. Didn’t quite have the stamina today but still a strong effort. She was very hungry at dinner, eating a massive bowl of left over chicken and rice from Suzanne that I brought in just in case. Bob was making a stir fry but it would have to be pureed so he let me feed her the chicken and rice without him looking. Cool.

We had a nice Skype session with Laurel after dinner in which Janet was very loud and clear although sometimes speaking nonsense and other times completely off topic. She must have used all her energy during that conversation because thirty minutes later she was pretty much asleep and it was only 8:15. I don’t remember a more rapid decent into sleep mode. I suppose I shouldn’t be surprised considering she had no rest time this afternoon at all and was pretty active all day.

Today was not a good bathroom day for Janet. She often asked me if she could go but it was always too late by the time she asked and she seemed to pee a lot today. Each time I’ve had her standing she had peed as well but this time she actually said she had to go just as she finished her second stand. Hopefully today was a blip but I will attempt to set up a proper schedule for the staff to toilet her in the future.

Praying for a restful night and readiness for an active day tomorrow.

Blue Sunday #TSJ

I got a really nice surprise when I arrived at Connect this morning. Bridgette from Janet’s 4B days was working in Janet’s house for the day and she and Garrett had Janet up early, fed her breakfast and had her to the gym. All by 9:30. Janet was all smiles as she was heading to the bathroom with Bridgette when I got there and it was apparent that they were getting along despite Janet telling me later she didn’t remember her. Janet was able to present Bridgette with a happy face lollypop on our way out and that may have contributed to Janet’s laundry being done and put away when we got back tonight. Or maybe it was just Bridgette being the good nurse she is.

By the time we got home the Seahawks were down 10-0 so we quickly got our jerseys and as many other blue things we could find on to try and start a comeback. They did indeed come back but couldn’t close it out. I’m excited for next year as this young team learned a lot in those two playoff games. Janet watched quite a bit of the game but she needs a lot of coaching to understand whats going on. She ate a football game sized lunch of soup, grilled cheese, dill pickle, chips and a bowl of fresh fruit. I managed to give her a little leg stretch before we Skyped Leslie. Her legs seemed rather tight today but she still has good movement in both and made a decent attempt at standing from the edge of our bed. During the call with Leslie, Janet was having a little trouble being loud and expressing her own thoughts but it was a decent conversation with Janet calling it off as she was getting tired. Nice to see her recognizing that and doing something about it. Now if she would only agree to an afternoon rest time.

We played match the Sesame Street characters a couple of times with Janet struggling with anything on her right and really struggling with the game in general the second time around. I need to give her a break in between. Spelling Bee Bingo was next and although we tied both games Janet really doesn’t understand this game yet and her vision is an issue as well. Dinner was in the football theme again for Janet. Two bowls of a casserole Suzanne gave us along with a bunch of fresh veggies then banana bread followed closely by hot cinnamon bread freshly baked by our awesome neighbor Barb.

A pretty good day despite the Seahawks loss. Janet seemed content to be home and judging by the amount she ate today must be feeling pretty good. I am noticing a little more difficulty in stringing together proper words to form sentences. She seems to be using a little more Klingon these days or words that have nothing to do with what she’s talking about. When Kiko and Joel dropped by this evening Janet’s response to a question from Kiko was to repeat what Kiko had asked her. She has been like that when she is tired but I think I’m seeing it more often now. Could still be recovering from the seizures or it could be the drugs or it could be me looking for the effects of both those. Time will tell.

Praying for rest and healing and a productive day of recovery tomorrow.

Fresca #TSJ

Dr. Miller visited Janet first thing this morning then came into the gym to say hi when I was working with Janet there after breakfast. He said he was truly impressed with how she has improved and stated “this is the best I’ve ever seen her”. He was a little unsure of what to expect having heard about the seizures but agreed that she has bounced back really well. I asked him about the Dilatin and its’ side effects. He understands my concern and advised me to keep an eye on Janet over the next couple of weeks to see if there are any signs of excess confusion or other cognitive impairments. There are other drugs that could be used as anticonvulsants but they are not necessarily better and all drugs have side effects. He cautioned that side effects don’t appear in everyone so just watch for now and see what happens.

Our workout went quite well with Janet getting herself on her tummy this time, allowing for a decent hamstring stretch. I’m not seeing any real change in the severity of the tone in her legs but her right arm and shoulder seem to be improving. Despite her reluctance I had her use the stripper pole again and she performed her best standing yet. She got much straighter than yesterday and was able to let go of the pole and hold my shoulder so that more weight was on her legs. She still stands on her tippy toes but I’m confident that with time and more weight bearing through her legs her ankles will loosen up. The range is still there so we just need for those muscles to know when to turn off. I plan on demonstrating Janet standing to Tez as soon as possible and asking him to get her “walking” in the parallel bars soon.

With the workout done we rushed off for an appointment to view a condo downtown. I wanted to see what 1500 square feet looks and feels like to live in. It felt a little small but I think its doable with the right floor plan and the unit we saw certainly did not have the right plan at all. The realtor will keep an eye out for us.

At home it was time for a real food lunch then some NFL playoff football while we waited for two different people to stop by to look at Cam’s car he is trying to sell. I think we had success by the end of the day so come Monday there may be one less vehicle in our driveway. I used our waiting time to update Janet’s nail polish to Seahawks blue in readiness for the big game tomorrow. I figured she deserved a reward for sitting still so long while I did her nails so I offered her a pop. As soon as I mentioned we have Fresca, she smiled and rather mischievously said “that would be really nice”. Finally a cold drink she likes!. For dinner we enjoyed an unauthorized chicken dish that Suzanne had kindly dropped off for us then we rushed off to church so we can watch the Seahawks game tomorrow as it starts at the ridiculous time of 10am. Not sure if that’s the right thing to do but Janet did enjoy the service and I commented to her that unlike before her illness, she is liking the music parts of church more than the talking parts. She smiled and shrugged her shoulders.

On our return to Connect I had Janet put away her stuff, she is starting to figure out where some things go and she is very good at taking her shoes off now. Once in bed we read some of Slow Dance after I reassured her we had not finished it already. Janet took about ten minutes to ask me a really important question that she “needs to know the answer now” but never made it clear and she eventually forgot the whole thing. It started out with “how do we get to Washington to…” and evolved into “what’s the difference between Strawberry one and…” I’m open to suggestions if anyone has any. By the time I said goodnight she was closing her eyes and had a smile on her face that makes it really hard for me to leave.

Praying for rest and healing, a fun day tomorrow, and a Seahawks win.