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Wednesday, April 28, 2010
Get Well Soon!
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Happy Birthday
I received a call today from Kathy's sister approx. mid morning. It was a bit of an odd time for Coleen to call, but I knew she was with Kathy so I immediately picked it up. I am always a bit worried when I first pick up, but Coleen let me know that Kathy was moving to a new room further down the hall - 2032, outside of the ventilator wing. A new patient had been admitted and they were moving in on a ventilator and needed Kathy's old room. Kathy and her roommate get along very well so they both moved together to the new room. This move proved to be the beginning of a wonderful day!
Later that morning I received another call from Coleen. This time was the best news yet, Kathy had walked (using a walker) under her own power, a total of about 20 feet!! The 20 feet was over three separate tries. When therapy was over, I got another phone call from Kathy to tell me "I am walking". I was totally blown away and excited for her. Walking is probably the best present Kathy could get today.
Since it is Kathy's 39th birthday we had a small family birthday party with cake and ice cream. By 7:30 Kathy was exhausted and ready for a shower and bed. All in all an awesome day.
Happy Birthday Kath, you are the best partner I could ever ask for and I can't wait for you to come home. I love you.
Monday, April 26, 2010
Monday 4/26
Today started off a bit rough as Kathy was not feeling well and had to miss both of her normally scheduled therapy sessions. By 2:00pm she was finally feeling much better and was able to get into a later therapy session. Missing the two sessions was stressful, it is very obvious that she wants to be in therapy as much as possible and make every bit of progress she can make everyday. Thankfully, her sister Coleen was here for most of the day and helped her through feeling sick, the emotions of missing therapy and missing her "normal" life.
This rough start to the week came on the heels of a very busy Sunday with lots of friends and family visiting for most of the day. Kathy also did a Skype call with her niece who was off to her first prom. Kathy and her niece are very close so Kathy's inability to be there to see this milestone was difficult for both of them. Kathy's resolve always impresses me, just like her need to be in therapy consistently, she is now totally focused on not missing any other big events in the lives of her friends and family. It seems that out of every tough emotional challenge she simply strengthens herself for the next push.
The progression of Kathy's physical strength is subtle but significant. The new thing is her ability to fairly easily use the phone and the super extending TV mounted to the wall behind her bed. As long as the TV and phone are close she is able to use them. Also, we have been joking for weeks that once Kathy was able to operate the controls for the bed we would know she was on her way, of course she know works the controls effortlessly.
The therapy session today included core work and additional strength and dexterity work mostly on her left arm. Kathy's right arm has come along very quickly and she can quite comfortably do most things with the right arm. The left arm is lagging behind the right and the shoulder muscles do not allow her the same range of motion. However, tonight was the first time Kathy lifted her left arm over her head without any help. While I was off to run an errand, Kathy told me she planned to work on the flexibility in her left shoulder. By the time I had returned she was showing off her new ability!
The plan for tomorrow is for Kathy to get back on her feet and work either in the walker or possibly on the parallel bars. Her therapists are not sure if she is ready for the parallel bars, so we will see what happens tomorrow.
Friday, April 23, 2010
Friday Visit
I was invited to join Kathy in her OT therapy today so I arrived a little earlier than normal. At 12:15 I found Kathy in "lunch group" which is normally three to four people who all eat lunch together and practice using utensils and eating independently (therapy starts at 1:00pm). Today lunch group was "lunch Kathy" since she was the only one who showed up. It dawned on me that even though people are in therapy they still have the choice to show up or not show up.
After lunch we were off the the rehab gym. The first goal was to teach me some of the stretches that Kathy does in therapy so that we can do them together over the weekend and when back in the room. I practiced the stretches on Kathy's legs with the therapist keeping a close eye. Kathy's overall range of motion is drastically changed from prior to GBS. She is very tight and it is fairly easy to feel her points of resistance. However, I have been doing stretching with her since she first came off the ventilator and her overall flexibility has already increased from where it was a week and half ago. After we reviewed the stretching regimen, Kathy was given some homework, three interesting tasks for the weekend. 1. Place a rolled up towel behind her back in line with the spine and practice rotating the shoulder blades back and forth around the towel. 2. place change on the table along with a small container and move all of the change from the table into the container. 3. Tear up paper towels. These things all seem simple to me, but they are really difficult for Kathy.
After homework Kathy still had a full OT session. Seated on the end of the mat she was asked to hold a ball and shift the ball from her right side to her left side touching the mat next to her on each rotation. After this it was a modified side plank where she was asked to lean over to her side and rest on her elbow, these looked difficult for her. Last was to sit up straight on the end of the mat and place pillow cases back onto two pillows. The second pillow was heavier than the first. This process really made Kathy tired and she needed quite a few breaks. The therapist paid very close attention to how tired Kathy looked and encouraged regular breaks.
After therapy Kathy received a new wheel chair that had a lower back and no adjustability of the seated angle. This chair requires Kathy to use her own core muscles to sit up straight. She also was instructed to wheel herself out of the gym under her own power. This was really cool to see.
After OT was nap time for a hour or so, then dinner. Kathy and I ate dinner together then took a walk outside around the Kessler campus. The weather and temperature was gorgeous and it was great to get outside for an extended amount of time. Kathy wrapped up the day with a shower, then to bed around 8:30pm.
After lunch we were off the the rehab gym. The first goal was to teach me some of the stretches that Kathy does in therapy so that we can do them together over the weekend and when back in the room. I practiced the stretches on Kathy's legs with the therapist keeping a close eye. Kathy's overall range of motion is drastically changed from prior to GBS. She is very tight and it is fairly easy to feel her points of resistance. However, I have been doing stretching with her since she first came off the ventilator and her overall flexibility has already increased from where it was a week and half ago. After we reviewed the stretching regimen, Kathy was given some homework, three interesting tasks for the weekend. 1. Place a rolled up towel behind her back in line with the spine and practice rotating the shoulder blades back and forth around the towel. 2. place change on the table along with a small container and move all of the change from the table into the container. 3. Tear up paper towels. These things all seem simple to me, but they are really difficult for Kathy.
After homework Kathy still had a full OT session. Seated on the end of the mat she was asked to hold a ball and shift the ball from her right side to her left side touching the mat next to her on each rotation. After this it was a modified side plank where she was asked to lean over to her side and rest on her elbow, these looked difficult for her. Last was to sit up straight on the end of the mat and place pillow cases back onto two pillows. The second pillow was heavier than the first. This process really made Kathy tired and she needed quite a few breaks. The therapist paid very close attention to how tired Kathy looked and encouraged regular breaks.
After therapy Kathy received a new wheel chair that had a lower back and no adjustability of the seated angle. This chair requires Kathy to use her own core muscles to sit up straight. She also was instructed to wheel herself out of the gym under her own power. This was really cool to see.
After OT was nap time for a hour or so, then dinner. Kathy and I ate dinner together then took a walk outside around the Kessler campus. The weather and temperature was gorgeous and it was great to get outside for an extended amount of time. Kathy wrapped up the day with a shower, then to bed around 8:30pm.
Thursday, April 22, 2010
Wednesday, April 21, 2010
Update
Kathy is in very good spirits today. At noon today she had lunch group which allows her to eat lunch with some of the other patients while practicing eating entirely on her own. She aced this and did not need any help to finish her food. This was a major positive reinforcement for the progress she is making. Aditionally, Kathy is now on a normal diet which indicates that she is strong enough to bite, chew, and swallow all normal foods.
Last night Kathy and her parents attended a workshop at Kessler talking about the transition to home and some of the hang ups with handicapped access in homes. Kathy quickly realized that it will not be possible for her to return home with any level of limited mobility. Our little cottage home just will not meet these types of needs. This was a good thing and re-affirmed her commitment to walking out of Kessler.
The next big goal is to get the feeding tube removed. Since she is no longer receiving any food or medicine through the tube it is basically a useless appendage. However, Kathy must maintain a certain level of calorie intake to have it removed. This has become a primary focus, with all meals and even additional calorie shakes to supplement her intake.
This morning (once again) Kathy's sister was nice enough to shave her legs, which is a minor thing but is huge for her comfort level. It is now evening and Kathy is just getting out of the shower. The lift moves her from the shower chair to the bed then relaxation for the rest of the day!
Sent on the Sprint® Now Network from my BlackBerry®
Last night Kathy and her parents attended a workshop at Kessler talking about the transition to home and some of the hang ups with handicapped access in homes. Kathy quickly realized that it will not be possible for her to return home with any level of limited mobility. Our little cottage home just will not meet these types of needs. This was a good thing and re-affirmed her commitment to walking out of Kessler.
The next big goal is to get the feeding tube removed. Since she is no longer receiving any food or medicine through the tube it is basically a useless appendage. However, Kathy must maintain a certain level of calorie intake to have it removed. This has become a primary focus, with all meals and even additional calorie shakes to supplement her intake.
This morning (once again) Kathy's sister was nice enough to shave her legs, which is a minor thing but is huge for her comfort level. It is now evening and Kathy is just getting out of the shower. The lift moves her from the shower chair to the bed then relaxation for the rest of the day!
Sent on the Sprint® Now Network from my BlackBerry®
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