Janet was awake and looking pretty calm and content when I got back this afternoon. After a little stretching we got ready to head for the sun. I sat Janet up and gave her time to loosen up a little more. She always seems to sit a little crooked at first. One nice hug later and it was into the wheelchair. I gave her her hat and she promptly put it on. I held out her eye glasses and asked her if she wanted to wear them. I’m pretty sure I saw a little head shake no and she made no motion for the glasses at all. When she does want them she’ll reach right out and take them so I put them away and off we went. The hallway was very busy when we left so I drove to the elevators and with some help Janet pushed the down button. On the main floor she did not want to drive at all so we headed straight for the beach. Again, Janet was very calmly enjoying the sun and the little kids playing on the beach. We left a little early though as the wind came up a bit and I couldn’t bare to watch as one mom was so distracted by her kid feeding a duck that she let her baby crawl right into the first few inches of the lake. She kept looking over to him from about fifty feet away but not doing anything and I was tempted to go get the kid but figured she knows what she’s doing so rather than watch in helpless horror I released Janet’s brakes and off we went. I’m sure Janet was cringing inside as she is the queen of “don’t go out too far”. I never used to be like that. What’s happening to me? Too much Anne of Green Gables?
We walked the route I tried yesterday and Janet stayed awake the whole time today. We went as far as the South Pandosy shopping area and I took Janet past our take out sushi place and the store we used to rent movies from. She did not seem to care about either place probably because they were in the shade. By the end of the trip she was getting a little restless in the wheelchair so I didn’t force any driving on her. She needed help with the up button and was very happy to be covered up in bed. We read a chapter of Anne and practiced on the iBlackboard and some of the preschool apps with nothing really exciting to report yet. In getting ready for bed she assisted me in scrubbing her tongue with the Nystatin and I let her brush her teeth but it’s a little awkward with the suction hose attached so I’m going to ask the Dr. if we can use a regular toothbrush from now on. I think she can handle it. Janet knows how challenged I am when it comes to taking off and putting on her shirts and PJ tops etc. and tonight she had a smirk on her face as I was clearly having trouble getting her PJ top lined up so I could button it. She found the first button and held it for me till I had the other side ready. All with a smirk. I know she was laughing at me and I told her so then the smirk turned into a smile. We said our goodnight prayer and I got my goodnight kiss and although she was eyes open I think she was close to sleeping and seemed very content as I reminded her what a good day she had.
Praying for a restful night of healing and a positive and fun day of learning tomorrow.
A much more cheerful Janet greeted me this morning. She looks better and is not nasally and had quite a bit of energy. After a little chat we did some stretching and I was pleased with how that went. Still a struggle with the usual things but much better than yesterday. Tom came in at nine to say Janet would be going to OT to try a standing frame at eleven. That meant we had some time after the stretching for some school work. iBlackboard only produced some circles and a weak attempt at an x. I think part of the challenge is having Janet and the iPad in the right positions to make it easy for her. I haven’t figured out what those are yet. Maybe Kiko’s iPen will help. I read a picture book with her and asked her to point to various things in some of the pictures. With a lot of help she came real close to pointing to a dog. I think we have to be happy with an attempt to point because her vision will not allow her to hit the target exactly.
Right after pointing to the dog she closed her eyes for a little nap. Turned out to be a good one as when she woke it was time to head to OT. I let her drive part way there to wake her up some more, she did well. Tom and Jessica met us and took us to the OT workout area. Tom wheeled Janet up to this contraption and got Janet’s feet positioned. Chantelle joined us and along with Jessica helped stand Janet up while Tom adjusted a belt around Janet’s hips. Janet looked very worried going into this thing but once she was up she stayed very calm and everyone was pleased with her posture. The left leg, inexplicably, won’t straighten completely but everything else was great and Janet’s pulse and BP were way lower than the tilt table and stayed that way the whole twenty minutes she was up. We are convinced Janet is not uncomfortable on the tilt table but scared.
Janet drove part way back to her room. I didn’t work her too hard after all that standing. Back on the bed she had no interest in sitting as she started laying down as soon as her butt hit. Time for lunch then a visit from Janet F. Hopefully she stayed awake for that.
Praying for a fun filled afternoon.
Houdieno was at it a little when I got back this afternoon and even gave me a little smile when I got right up to her. Still not a lot of energy there but she seemed in better spirits. I started stretching her but she was much looser than this morning so I elected to get her out in the sunshine instead. I had to really work at getting a reaction from her as to whether she wanted to go out or anything. I threatened to jump onto the bed with her and that brought a reasonable smile to her face. Based on that I figured it was time to go. We had forgotten to weigh Janet yesterday so I asked Mirella if we could do that as I was getting her up. She brought in this cool little chair that weighs you when you sit in it. No change from last week for Janet and she didn’t have to fly this time. Because her weight is stable and she is tolerating the formula she will only be weighed on the first of each month now.
I managed to get Janet to drive the wheelchair from the main floor elevator to the outside door but that was about it today. An even warmer day than yesterday made for a busier beach today. Janet seemed to be soaking up the sun really nicely and even managed an assisted wave to a two year old boy that waddled by. I decided to head south on Abbott St. with her for something different in hopes that would brighten her up but three blocks away she was sound asleep. I drove the wheelchair all the way back with one hand and the other hand holding Janet’s head up a little.
Back in the room as soon as she was lying down she opened her eyes but I told her I was going to head home because she is so sleepy. She seemed to understand and closed her eyes as we said our goodnight prayer, opened them on Amen and gave me a little goodnight kiss. Seconds later her eyes were closed again. I felt sad leaving her when she first opened her eyes but the prayer and kiss told me she is not as out of it as she seemed today and probably has good reason to sleep.
Praying for a restful and healing night and a solid day of learning tomorrow.
Janet has had a rather dull day so far. It is beautifully bright and sunny and warm outside but she has been out of sorts all day. No smiles, a weak kiss and the appearance of being bothered by something. I thought maybe she had a cold as she is a little nasally but her vitals are all fine. Her session down in rehab with Tom went fine considering her reduced level of brightness. I don’t think the new environment bothered her at all. She reacted to the different sights and sounds around the room but was still able to focus on Tom and the task at hand. I’m confident she can workout in that environment and I think Tom was pleased in that respect too. It is very clear that Janet is no where near ready to be there full time. I had her drive her wheelchair out of rehab and she did well, much slower than yesterday though and that may in part be due to the busyness around her. She was looking around a lot with a little bit of a worried look on her face.
The meeting at the house with Chantelle and Cathy brought up more questions than answers unfortunately. The big issue, as I thought, is entry into the house. Cathy does not have enough knowledge to know if a vertical chair lift would work at the front door or not. She seems to favor a porch lift up to the balcony at our bedroom. Without that question answered all other issues are moot so the next step is going to be having someone from a company that installs lifts look at the house and see what they recommend. Stay tuned.
Praying for a brighter Janet and some fun in the sun this afternoon.
Another great smile as I walked into Janet’s room this afternoon. I hope Heidi got one during her visit just prior. A nice stretch then out into the sunshine. Janet drove well down the hall to the elevators and with a little coaching hit the down button. She then drove down the main floor hall to the outside door in record time and even tried a little driving on the first section of sidewalk outside. She is definitely gaining confidence with the wheelchair.
While we basked in the sun at the beach we called Mary/Gaga and Janet reacted to some of her mom’s comments. A slight smirk once, a raised brow once and frequent looks at the phone. After a twenty minute tanning session we headed off for a walk. I invited Janet to drive in a couple open and flat areas along Abbott St. and she did but seemed to sense when there was a hazard nearing like a downhill section or a bump. We had a little texting chat with Kiko who is in Japan and sent her a picture to remind her how beautiful it is here. We met a one and a half year old and very friendly Lab, about the size of twenty Nashes, who Janet patted a little shyly. Back in the Centennial Building Janet set a personal record for distance (middle of lobby to info desk in Royal Building) and speed (I could actually walk a steady pace beside her for about a minute) and earned a strong high five! All the excitement from that accomplishment must have made her forget how to push as she did her swiping over the elevator button again. Oh well a solid performance anyways.
Back in the room it was time for a brief nap then a chapter of Anne then a little You Tube watching. She enjoyed some of The Voice clips I showed her and the Olate Dogs but not So You Think You Can Dance. It was then time to get ready for bed. Our day ended with a smile and a goodnight kiss and Janet seeming to not quite be ready for sleep yet but I had to go as it was getting dark.
Looking forward to the home inspection tomorrow and the possible workout at Rehab. Praying as always for complete healing and restoration of the ability to communicate.
I was welcomed with a very nice smile this morning and a very bright Janet. She must have followed my instructions and got a good nights sleep. We got a good stretch in and then Tom dropped by to say he would not be able to take Janet to rehab today. No time. We will try tomorrow.
Chantelle and Cathy dropped by just after that and we had a real interesting and busy visit. They watched me transfer Janet from bed to wheelchair and were happy with my technique. Cathy was most impressed with Janet’s ability to sit up so nice and straight. I demonstrated our standing drill as well and got top marks for that. Cathy tried teaching us a standing pivot move to use as a transfer but Janet is not strong enough to pull that one off yet. Something to work towards. Once in the chair we went for a little drive and Janet grabbed the bed rail to back the chair away from the bed then did a real good job driving while being observed. Nice performance under pressure. High five! Tomorrow morning they both will come to the house to see if it is suitable for Janet to live in.
Tom reappeared a few minutes after the OT girls left and we practiced having Janet sit up from a near laying down position. She did well and with more practice I’m sure will be escaping with greater frequency. Tom was happy with Janet’s weight shifting abilities and how she moved her left leg to achieve more stability when sitting. Lots of good signs including a high five.
Lunch has begun and Janet is napping so I’m heading out to cut the grass. Looking forward to some tanning action this afternoon.
Seemed as though Janet had a good nap while I was gone. She was awake when I got back but appeared to have not moved much if at all. I was a little worried with her being curled up for so long but she stretched out just fine so we headed out for a walk in the sun. We had a really nice time soaking up some rays at the beach. She made me laugh when she took her glasses off and hung them by one arm in the collar of her shirt. A very styling move that I don’t ever remember her doing. Cute. We took a slow warm walk in the sun for about an hour then Janet drove most of the way down the long Centennial Building hallway. Back in the room Janet didn’t seem to have much energy left but stayed awake so I climbed onto the bed beside her for a few minutes and got a huge smile from her and some shoulder pats and rubs. It was a nice quiet ten minutes. After she got plugged in for dinner I read a chapter of Anne to her. She listened intently and smiled at me a couple times when I had some difficulty reading. I still can’t believe how that book gets me.
I decided to call an early night as although Janet was awake she wasn’t all that responsive so I got her ready and said goodnight at 6:30. A chance for me to do nothing tonight except update this blog.
Tom said he will try and set up a session in the rehab unit for Janet tomorrow morning. I coached her to get lots of rest tonight and be ready for that. Chantelle and someone named Cathy from Community Health are going to visit Janet tomorrow and then inspect our house Wednesday morning to see how realistic bringing Janet into that building is.
Thanking Jesus for all the time I get to spend with Janet especially in this beautiful weather. Praying for healing and restoration of Janet’s ability to communicate.
A fast start to the day as Janet was cleaned up as I arrived at eight. I got her dressed and starting stretching when Tom arrived to announce we would try the tilt table this morning. Janet’s favorite. Not. It actually went better than last time. She made it forty five minutes at sixty degrees and stopped clinging to me fifteen minutes in. Her BP stabilized after Leanne stopped working her right shoulder and Janet only got really uncomfortable when I let her down. Not sure why but it scared me a little. She was fine once I got her back onto her bed. I talked to Tom about it and he will make sure he’s back in time to watch next time. Janet is sleeping it off now and I’m heading to a meeting at work.
Praying for some fun in the sun this afternoon.
Janet was awake when I returned around two this afternoon and it appeared that she had a good nap. We did a little stretching then video skyped Laurel, Raju and Cam. It was pretty funny as Janet and I were getting ready to head out for some sunshine and Laurel looked like she was dressed for winter. Janet watched and listened but I’m not sure what she could really see as the Skype image didn’t have a lot of color and was a little dark so kinda hard for her to process what she was seeing. I believe she knew the voices though. We called Heather after that with similar results but better picture quality. If any of you out of towners wish to try a video Skype with Janet send me your Skype name and we’ll see what we can do.
Outside we walked some of the same area we did yesterday plus one new street. Janet followed a command to smell a flower. She leaned forward and put her nose up to a yellow rose and some other flower and I thought that was pretty good as all I said was “want to smell the flower?” That’s going in the Dr. McCann file. Back inside Janet made it all the way down the Centennial Building hallway again. The last few meters she kept going while we chatted with Dr. Main as he passed by. Even gave me a high five while he was watching. Moments later she nailed the elevator button right away. Seems to like the up one a little better than down.
Back in the room we watched a message from LifeChurch.tv on having fun in a marriage. Janet actually watched the entire thirty six minutes even looking over at me with raised brows a couple times. I made a few comments about the message afterwards and got some smiles from Janet. After a little break including some much improved nose blowing I tried some iBlackboard with her and got some decent results as I tried getting her to write yes and no. I had to lead her all the time but she got the motion down pretty good towards the end.
After a change I got her dressed for bed as she was falling asleep around 6:30. A very enjoyable day. Praying for a productive and healing tomorrow.
When I arrived this morning Sarah was just finishing getting Janet ready for the day. She commented on how well Janet is following commands now. I encouraged her to make a note of what she notices. She said Janet was very helpful in getting dressed and was definitely following every move Sarah made. I commented that Janet had gotten out of bed the other morning and Sarah added that she heard Janet had lowered one of the bed rails. I hadn’t heard that one but am not surprised as I’ve seen her reach over and grab the release button on the right upper rail before. Houdieno indeed.
I took a long time stretching Janet this morning, really working her right arm and left leg. I got good results but needed every minute I used to get them. Dr. Nottekopp came in and we had a good chat. I explained how I was noticing more tone in the right leg and how tight the left knee is. He asked about the Botox and had a look at her legs and arm. He said to keep stretching often and we’ll keep an eye on things. Speaking of eyes I asked him about Janet’s vision. He gave her a quick exam and said that without her communicating there is no way to tell for sure but it would make sense that she would be neglecting her right side just like her right arm and leg. He left field is probably good and the right not so good. The eyes look healthy so the problem is brain related and until she can let us know we have to wait. I told him of the head shake no I think I got yesterday. Just for the record. He seemed pleased to hear that.
I did some sitting and standing with Janet and we set a record for time standing. Two minutes! I say we because I have to hold her up and despite her smallness that’s not easy. Standing seems to be something she really enjoys. She was nice and straight and looking around each of the four times we stood. High five! Just like the tilt table I can tell she is getting a workout while standing but before she got too tired I tried some sit ups with her. While sitting on the edge of the bed, I held both hands in her lap, leaned her back a ways then asked her to sit back up. She was quite happy to do this a number of times going farther and farther back. I could almost see her abs working.
All morning Janet has had a bit of a stuffy nose so I decided to see if she would or could blow it. Surprisingly she did! Not hard but enough to get a little something on the Kleenex. High five!
It’s now nap time after that busy morning. Praying for another fun in the sun afternoon.