We so blessed

As I said in my last post I came home on Tueaday. Wednesday I had my first shower in weeks. It was WONDERFUL. The dry shampoo is good but not like the real thing. Then that evening about 20 members of our church choir came to our house and sang for about 45 minutes. They filled the house with music. It was so special to feel the love of so many people. As if that was not enough I had my first outing - to my primary care doc. This can be harder then it sounds. Whenever I go some place we have to take a suction machine to clear any sucretions out of my lungs if needed, and a small bag of other necessary things. Any we did it. I was very glad to see him and have him agree with us that there was no need to adjust my thryoid or fuss with my fluctuating blood sugar until my body settled down. So very nice to see a doctor that knows me. My stay at Vibra helped reminde me how fortunate I am to have doctors who know and respect each other and can access lab results from each other or the hospital with a few keystrokes on the computer. The big hug from both the doctor and the nurse were very nice too. On the way home the lung doctor called to see how everything was going. Really great people.

homecoming

Last Tuesday was the red letter day. I got home about noon. There was tons of stuff waiting for us. Todd met Christy, from the agency that supplies all the resperator equipment, at the house at 10:30. They had separated all the supplies into the things that are changed daily those that are changed every 3 days and those changed every week. Monday we had finally convinced Vibra Dave was able to drive me home and we promised we would have a caregiver ride with us. Tuesday Dave had to sign a few papers while our caregiver dressed me. Then I was free! It took time to organize every thing and figure out how to do all my care. But we did get ready for Christmas and it was wonderful.

Off To Recovery

Hello from Vibra: Cynthia was transferred to the Vibra recovery facility about 1:00 today, the 12th. She is doing fine, but is very tired tonight. I am sitting in her room now, and the time is about 7:30. She will be here until we get our caregivers trained on the use of the ventilator and how to manage her trech. I WILL be trained too, which probably worries her the most. We are communicating either by holding up a card with the alphabet on it and she points to letters with her toes, or we use her Dynavox computer if it is hooked up. We are still getting used to the new facility and have not settled in fully yet. Hopefully we can work out some the kinks tomorrow. Dr. Libby, her pulminologist calls her his hero and best patient. Considering that she had surgery, a collasped lung with a drain, a trech and now being on a ventilator, five days in the hospital is a fantastic recovery. Of course, all of you that know her would expect nothing less. We have told the company supplying caregivers for us that we want 24 hour coverage when she goes home. We will be interviewing possible new caregivers in the next few days. We will keep Cindy and Yuki, the current caregivers, as well. Once we know more about what other equipment we will need at home, and train everyone on the type of ventilator she will have permanently, we will have a better idea of when she can come home. Of course her goal is to be home by Christmas. Time will tell. I will followup with another update in a few days when we know more.

Update on Cynthia

Hello Everyone:  As usual, I cannot get a return on this keyboard, so this will just be a long paragraph.      Today is Saturday, about 5:30 pm.  Cynthia has been out of bed, sitting in her chair for most of the day.  The hospital staff removed the drain for her right lung and her catheter several days ago.  She needs assistance getting in and out of the bed.  Her legs are still strong, so she can help the staff by standing up to us the commode or move into her chair.  The ventilator settings are down to normal, everyday air, and her lungs seem to be working fine.  The respiratory therapist sucks fluid out of her lungs about twice a day which is normal.  All of us have fluid in our lung, but we are able to move it out by coughing or clearing our throat.  However, since her throat is closed off, the fluids have to be sucked out manually.  This is one of the things we will all have to learn to do to keep heathly and happy.    We are all hoping that she will be transferred to a rehabilitation facility on Monday to finish up the healing of her incisions.  While she is there, all of us will be trained on how to take care of the trach, her ventiltor and how to change out the various parts and pieces that need to be periodically changed.   She may be there for a week or more, depending upon how she is doing and how well we and her caregivers are learning.       The most dificult part of this entire experience is learning how to communicate with Cynthia.  She sometimes wiggles her feet to say yes or no, but we also us a card with the alphabet on it, and she points out the letters to spell a word with her toes.  In the mean time, we are trying to guess what she is trying to tell us.  Sometimes not successfullly, which is very frustrating for all.     Caregiver Yuki is here massaging her feet, so Cynthia is a happy camper for awhile.     Kari will be back about 7 pm to stay with her until she goes to sleep.  Kari is going home tomorrow afternoon, so the care will fall to our caregivers and me.  Once we get more informaton from Vibra, the rehav facility, we will know if she needs 24 hour per day caregiver coveraage, any kind of special bed, etc.  So we still have a long way to go.     I share all of the cards and emails you have been sending with her, and they do make a difference.    We both feel so blessed to have Todd and Kari with us and helping out.  I do not think I could have done it without them.     Guess that is all for now, I will try to update again in a few days.

Cynthia's New Adventure

Hello Everyone, this is Dave bringing you up to date with Cynthia's New Adventure. Many of you may already be aware of what is going on, but we wanted to reach out to as many people as we can to let them know about our latest happenings.
We started having problems on November 30th when Cynthia complained about pain in her abdomen and back. We went to the Emergency Room, but they could not identify any specific issue causing the pain and discomfort. Towards the end of our visit at the ER, she started feeling better and the pain subsided, so we were sent home.
Over the weekend, the pain returned and was more localized on her right abdomen side. We were able to get into our doctor on Monday, and he felt she might be having gallbladder problems. After some blood tests and a CAT scan, the doctors determined that her gallbladder was badly infected and had to be removed. We were sent immediately to the hospital across the street, and she was admitted for laproscopic surgery to remove the gallbladder.
Our Pulmonologist told us that a tube would have to be inserted into her throat and she would be on a ventilator during the surgery. He told us that there might be a problem weaning her off of the ventilator and back onto her BiPap breathing machine. She still wanted to go ahead with the surgery, so about 8:30 that evening she was rolled into the operating room. Luckily both Kari, Garrett and Todd were able to be with her before the surgery and spend to some time with her. At 10:30 we were told they had finally be able to insert the tube into her throat and were starting the surgery. She came out of the operating room around midnight and went directly to the ICU. The surgery went fine, but the doctors were concerned about the tube in her throat and her ability to go back to the BiPap. They had an extrenely difficult time geting the tube in.
 The next morning Dr. Libby, the Pulmologist, told us that the tube problems prevented them from weaning her off the ventilator, and the only alternative was to give her a traceotomy and put her on a permanent ventilator. When he asked her if she still wanted to go ahead, she emphatically indicated "yes" by shaking her foot up and down. The trach was done about 5 PM last night (December 6), and this morning she is doing fine using the hospital vent. During the original surgery her right lung had collasped, and a tube had to be inserted into the lung cavity to help the lung re-expand and drain the cavity. We hope to have the tube pulled tomorrow. She will be here in the hospital for several more days until the trach incision heals, as well as the other incisions, and her strength and health returns. From the hospital she will be transferred to a recovery hospital facility to get used to the new ventilator we will take home with us. And during that time myself and our caregivers will be trained on how to maintain her trach tube and the ventilator. We will probably have to get at least one more caregiver because she will need 24 hour coverage to ensure she is protected. With the ventilator and trach, she will not be able to speak or eat anything by mouth. This will be a big transition for all of us, but we will see it through somehow. So as of now at noon on December 7th, that is where we are. As more infomation becomes available I will try to update you. Please do not plan on sending her flowers because she will want me to take them home and take care of them. And they are not allowed in the ICU. Cards are great, and hopefully she will be back on the computer soon.

Fun Sunday

Last Sunday Todd's family joined us for special dinner. Yuki, one of my caregiver, is Japanese, and an great cook. She prepared dinner with Gyoza (Japanese pot stickers), Yakisoba noodle, and chicken teriyaki. Earlier in the week Yuki and I had gone to the store to pick all of the necessary ingredients. Sunday afternoon she made the filling of Gyoza including ground turkey, ground pork, cabbage, fresh ginger and other  seasonings. While this was chilling, she made a teriyaki marinade for the chicken, and prepared vegetables to go with noodles.

We had planned to have boys to help form Gyoza. Standing around the kitchen table (after we made them wash their hands), Yuki showed how much filling and how to shape wrappers. That ability for forming Gyoza seemed to come naturally to Walker. Sam had to work little harder, but really enjoyed making different shapes after Yuki said her children had always done that. Meanwhile Miles was not concerned about appearance, he set up a assembly line figuring speed was more important than appearance.

We made almost 50 and all were eaten that night. Walker wasn't going to quit until they were all gone. Dave was right there with him. They both agreed that you don't usually get to eat as much Gyoza as you want, but the night they  did.



 

Technology is Great

About 25 years ago, when a friend Mary had ALS she had to use an alphabet board and a pointer to spell out words so she could communicate.  Things have really changed.  At our ALS support group yesterday there were three different communication devices that were being used for those who cannot speak.  Additionally, there was a whole batch of us with power wheelchairs that scoot all over the place on our own.  Many of us use bi-pap for breathing assistance.  I use it the most - 24/7.  But many of the others use them at night.  Several of us also have the computers mounted on our chairs while others choose to use an iPad.  The technology today makes it so much easier than when I first found out about ALS with Mary.

Always Something New

This past week has been very busy with different kinds of activities.  I'll start with one and may or may not get to the others. 

Once again technology is my friend.  My left arm is now having difficulty driving my wheelchair.  We got attendant controls on the back but I like to do my own thing.  So Monday we had an appointment with the physical therapist who is a "seating specialist" - bet you didn't even know there was such a thing!  Accompanying me was my entourage, Dave and both caregivers, Cindy and Yuki.  It was Cindy's day off but she had noticed some problems and asked to join us.  The PT poked and prodded and checked my back and neck and made adjustments.  Then the good part came...

The wheelchair representative brought a chair with foot controls for me to try.  It was great fun!  Before we could try it we had to take my bi-pap machine off the back of my chair and figure out some way for it to follow me in the other chair.  The best solution was to rest it on a tall rolling office chair and have Dave follow along behind me.  After a short bit of driving, the PT set up two chairs and asked me to do a figure-eight around them.  I had no problem, unfortunately, Dave and the office chair didn't fare as well.  After that they let me try a higher speed and then he really had some challenges.  I was driving using my left foot and had to go forward, back, and sideways.  This came easy for me thanks to my Bernina sewing machine.  Because the machine has a knee lever for the right knee, they recommend using your left foot for the foot pedal so I was ready to go "south paw" style.

There was one additional complication.  The technology is great but because I'm turning 65 in November I am now on Medicare.  So it will be a whole different process and hopefully it goes smoothly because I want my new toy.

explain this

We have 3 vine maple trees in our front yard. As the cooler weather is happening the trees are starting to change color. One tree has some gold leafs, another has deep red ones and the last one is mostly green with a few brown ones. I knows about mini climates but this is really mini.

Poor Quincy

When we first got Quincy, I was already eating with my left hand as my right one did not work. He learned that sitting by me was that best way to get dropped food. Some days he got more than others. In addition, he always followed me to the bathroom. Any food that remained in my lap would fall as I made the transfer from my chair to toilet. As I gradually started using liquid food, there was less of chance for food to be dropped. Even when somebody else fed me, there might still be dropped food. Now poor Quincy does not get anything as I only do liquid food in my feeding tube.

Of course, being a resourceful dog he has convinced both my care givers that he is staving.  He thinks he must have a treat during every meal, which they are very glad to provide.

Keeping In Touch

Dave, Cindy (one of our caregivers) and I recently attended our quarterly ALS Clinic Visit on October 10th.  The doctors and therapists poked and prodded to see how I was doing, while Cindy and Dave provided their observations and ideas.  Cindy's were very helpful, but Dave's were mostly ignored by everyone.  The long and short of the visit was that yes, my left arm and hand are getting much weaker, and I am having more frequent chocking incidents.  Dr. Libby, my pulmonolgist, suggested that I no longer try to eat anything because of the chocking problems, but Dave responded by asking who was he kidding.  He said yes he knew I would continue to sample the things I wanted to eat, but he felt compelled to give the advice anyway.

The Clinic Staff gets together after each four hour visit and summarizes their findings and recommendations, which are put into a letter sent to us the following week.  At the suggestion of a fellow patient at the ALS Support Group, we have started forwarding that letter to family and some friends so that they would have an idea of what is going on with me.  Most of the time it is too much trouble to try and explain to everyone time after time how I feel.  It gets a little tedious and can be depressing.  So we thought this would be a way to keep people informed.  If you did not receive the letter by email but would like to, please let us know and we will put you on "the list".

One More Adventure

My newest adventure involved my feeding tube, which allows food to be put directly into my stomach.  The tube needs to be changed regularly and "they" say it's very easy and anyone can do it.  Well, it still is scary and the first time we had it changed by the nurse at Clinic.  Our previous caregiver, Sherry, had watched and had gone back to school to get her CNA II which allows her to change the tube.  So she was eager to try.  The nurse from the Care Agency makes bi-monthly reviews for the insurance company.  We decided we would change the tube during her visit.  All seemed to go well. 

The next day, while our new caregiver Cindy was getting ready to feed me, we discovered the tube had come out!  Before and after every feeding, the caregiver pours water into the tube to keep me hydrated.  As Cindy was pouring the water, I could feel it running all over me.  Given the atmosphere in our house, she thought I was kidding!  Well, I wasn't.  She and Dave were determined to put the tube back in themselves because they had both been shown how to do it.  Meanwhile, poor Kari was stuck in the corner of the kitchen, really light-headed and not wanting to watch her mother in this situation, but she couldn't get past us to leave the room.    Dave went to get another spare tube to see what the directions might say, and we realized why it came out.  After insertion, a  balloon is inflated inside my stomach with sterile water to hold the tube in place.  The new tube was made by a different manufacturer and needed a greater amount of water.  While Kari managed to make it to the couch without passing out, Dave and Cindy worked to replace the tube.  It took a couple tries but when Dave got the right angle, it went right in.  Then they re-inflated the balloon with the correct amount of water, and lunch could continue.  Of course they were very proud of themselves, and Kari managed to regain her composure.  For that day, the adventure was over.

Soccer season is here

With the start of soccer season Saturdays are busy. Cindy is coaching  for both Sam and Miles teams. Todd is assistant coach for Walker's team. We try to be the cheerleading crew for all 3. Unfortunately Miles team always play early and we haven't made any of his. Having played 4 weeks we can tell a bit about Oregon weather. The first Saturday was the highest of the year at 98. They had to do frequent substitutions for water breaks and to spray the kids down. Week 2 was raining with temperatures in the high 60's.  By week 3 we were ready for anything annd it was perfect. Not too hot, but warm enough that the garden sprayer was fun. ( The next day was the ALS walk where it poured.) This last Saturday there was clouds with occasional sun breaks and periods of light rain more like we would expect in Oregon. It is all great if we can watch the boys play.

time really flies

Wow, it has been almost a month since I wrote something.  Things have been happening, but I will start with the most recent. 

The Portland Walk to Defeat ALS was last Sunday.  It is always inspiring to see everyone who turned out of the walk.  We had almost 4000 walkers, and all the wonderful people who supported and/or walked with Gang Greene helped me raise over $9000.  I am planning to make some changes for next year.  Last year it sprinkled on us a little bit, but this year it didn't just rain, it RAINED.  So next year I think we skip the hats and shirts, and get rain ponchos for Gang Greene.  That way we can be assured it will not rain.

Food for thought

I have been thinking. When my kids were babies I gave them breast milk, never formula. They rarely ate prepared baby food. What am I eating now? Cans of prepared formula. I do know of people that prepared their own food for tube feeding, but it sounds like a lot of work and need for tons of water.  Besides I almost float away now with the water I get. I guess at the beginning of life nutrition was more important to  me. Besides that I was much younger and had more energy.

Manzanita Bay - Part II

Celebrating Kari's birthday was a great way to start the week.  On Sunday, we all gathered around the TV watching the World Cup, hoping that the American Women would win.  By the time it was over, the rain had quit, and we were playing outside in the sunshine.

Monday brought our new adventure.  The local bike shop in Manzanita rents sand tricycles sized for kids and adults.  Additional they have a beach wheelchair available free of charge.  We had talked to the shop on Sunday, and he had rigged a platform for my breathing machine.  So we headed off to the beach with a tricycle for each boy, and three tricycles for the adults to share.  I am not sure who had the most fun riding on the hard sand near the water line.  We had a few accidents because the bikes are steered by leaning one way or the other.  Most were single bike accidents, but the two bike accident was a real body bruiser.  When we were tired of riding, we were able to watch some kite surfers launch from the shore and start riding the waves.  It was amazing to see.  After all that exercise, we had to refuel at the local ice cream shop.

The rest of the week we played on the beach, dug in the sand, diverted the creek that ran in front of our house, jumped the waves, and introduced Quincy to the beach.  He loved the sand and running, but did not like it when people walked by without telling him how cute he was.  Another activity at dusk was to release wish laterns from the beach.  These rice paper hot air balloons traveled high in the sky, floated on the breeze, and carried each person's wishes with them.

All in all, it was a wonderful week.  I got my salt air fix, watched the sun set over the water, played with the boys, and enjoyed being with my family.  The week was exactly what I had hoped it would be.

Great vacation

part 1
Everyone says that the weather on the Oregon coast is windy or rainy most of the time. We certainly had more then our share of good days. The drive over was dripy, but only a little rain.
Getting me into the house turned out to be more of an adventure then we expected. We have an 8 foot folding ramp we planned to use to get the 4 steps in the front. However the steps were slightly to narrow. Then we went around to the hot tub and into the studio apartment where Todd's family would be staying. With some manoeuvring I was able to get up the stairs out of that door. Then a new challenge presented, the threshold was about 3 inches high. First thing we did was call Todd hoping he hadn't left yet so he could bring our front door ramp. Fortunately we just caught him just in time. Now, what do we do in the meantime? With the speed up a bit and some help from behind I was able to bounce inside. Not my favorite way of doing it. Once I was inside Dave and the property manager were able to place some 2x4's by the front and back doors so I could do a controlled bounce in and out. In the morning Todd and Dave were able to slightly  modify the front steps and the ramp so  it would fit.
It was a bit dripy Saturday & Sunday morning, but it burned off and made a great afternoon. Sunday we celebrated Kari's birthday with her traditional chocolate fudge cake. It is rather thought provoking when your youngest child has so many candles on her cake.

BEST GRANDSONS

Have I mentioned that I have the best grandsons? Last night Cindy and the boys stopped by after dinner - Todd stayed home to do the dishes and get a break from kids. When they came Dave had just finished taking to the bathroom and hadn't time to get me resettled in my chair. The boys came in Pop Pop, then me. Walker immediately asked if I wanted my head tipped back and knew just how to do it. They are so comfortable helping put my arm brace on and getting me set up to eat. I am so very proud of the way they take everything in stride and accept my needs. Did I say anything about our house rules? There are usually 4 small dishes on the counter holding walnuts, pecans, almonds and (drum roll here) dark chocolate covered blueberries. The deal is they can have them as long as they give me 1 for every 2 they eat. Of course that means placed in my mouth. Don't tell them, but I am thinking about changing it to 1 for every 3. With all three now eating the blueberries it is hard to keep up.

First day of summer

YEA, the first day of summer was actually like summertime should be. It was warm and clear, with the brilliant blue sky that reminds me why this is such a great place to live. it also reached 82 - our second day of the year over 80.
I spent most of the day on the deck reading. My chair mounted computer makes this really easy. Of course that was after I checked email and checked a few websites I follow. The only problem I have is paying attention to the low battery warning. There are outlets on the deck, but I have a history of forgetting that I am plugged in and driving away. A cord doesn't stand a chance against a 400 pound wheelchair. When the battery gave up I had to look for a different way to cause trouble.
Dave was working on his motorcycle, so I had Sherry walk Quincy and me over to Todd before she left. The boys were working on an art project so I had fun watching them. Of course being boys they were soon involved in much more active fun.

SUN

Since I have whined so much about the cold and rain, I better mention the good days we have had. Two weeks ago, on Saturday was the last t-ball game for Sam and Miles. It was a spectacular day, clear bright blue sky with a view of Mt. Saint Helens that you could reach out and touch.
 This was also a game they were playing on the main field. It has real dugouts and a public address system. Cindy nominated Dave to be the announcer, a job he enjoyed. The boys said they could hear their names when they went up to bat. Such fun!
That was also the first week Kari used her family leave time to be with us. She will be working 30 hours a week so she can spend more time with us.  Some of the time she will do things with Dave, some of the time she will help with my care and some of the time she will work on her first quilt. Since I have started 3 others on their quilt she figured she better learn while  I could still talk.  She is on her way. It makes it nice that she has used similar tools on paper as are used to cut the fabric.
Another bit of good news was that after trying 5 times to find a secondary caregiver we were finally successful on the 6th. This means we will have help 6 days a week and occasionally even 7. Additionally Dave can get away for a few days once in a while. My decline continues at a slow pace so we are able to keep up my changing needs. And, even more important, I am enjoying life.

INTERESTING TIMES

Well, the past month has been interesting.  I have had to acknowledge my "head in the sand" approach to this disease is not always smart.  Let me give you some background.

Dave's nephew Brian is getting married at the end of June in the LA area.  I really wanted to go.  Flying is out of the question because of the air pressure in the plane and all of my necessary equipment that we would have to take.  Driving is difficult for Dave because his back does not like sitting in one position for long periods.  So I figured out a fun way to make the trip.  We would send Dave down on the plane to spend time with his dad and take him to the wedding.  Meanwhile Sherry and I, along with my sister Pat, would drive down and spend a little time at the beach.  Sherry would take care of me while Pat acted as our chauffeur.

We were working on all of the equipment we would have to take and all of the possible stops along the way.  We knew it would be major adventure, but Dave and I were ignoring the possible problems that might occur.  While at Caregiver Support Group Dave mentioned the trip to the ALS Social Worker.  He reaction was, "You have got to be kidding me.  What are you thinking?". 

When Dave got home and we talked about his reaction, we had to admit that we really had not been thinking.  Turns out that Todd and Kari were also very concerned, but they knew that their stubborn Mother would not be easy to sway.  So they had just talked to each other, but not to either of us.

I still wanted to go someplace and smell salt air, it had been way too long.  So now Sherry will spend the weekend with me while Dave goes down for the wedding.  My treat comes in July when we will spend a week at the Oregon coast in house right on the beach.  Todd and the boys will be there for the week, and Kari, Garrett and Cindy will be there for part of the time.  Having Sherry with us will help make it a vacation for Dave too.  Although after Sherry saw the pictures of the house, she said it might be a vacation for her too.

So July 15th to the 22nd we will be at Manzanita Beach enjoying the salt air, having our family with us, and still close enough to familiar medical care if needed.  The "head in the sand" approach can get us through most days, but reality needs to creep in occasionally. 

Spring?

Spring is here, according to the calendar, but not the thermometer. My brother and sister-in-law from Wisconsin were visiting the past weekend and it was warmer there than here. I really should stop complaining about the rain as all the plants have loved it. Everything is green and lush. However when the newspaper weather person compares our temperatures so far with Fairbanks and they have had 3 more days over 70 and several days over 80, it makes me wonder. It is much better now as the sun breaks happen more often.

A phone call

What is so special about a phone call? When you have grandsons who don't like to talk on the phone, every call is special. Walker likes to come to our house by himself, so when he called last Monday night that is what we first thought. Instead it was all five of them bearing pie and ice-cream. It had been a busy weekend so it was really fun to see them. Even more special Sam wanted to read to us from his first chapter book. He said he knew it would be hard but he could do it. The expression on his face when he realized he had read 3 chapters was priceless.

IT'S BEEN A WHILE

I just realized that I left everybody wondering about my lungs. Sorry about that. Everything has been fine since then.  We even had a bit of sun.
In fact we had several days with sun. Dave was even able to mow the without sinking. Some of the boys games have even been made up. We all understand about baseball being called off, but soccer! The parks department was trying to keep the fields from being totally ruined. Lots of good that did, the 2 make-up games played last Sunday were played in pouring rain. The boys thought it was great fun.. No, we didn't go to watch those games.
As much as I complained, it really hasn't been that bad. Last Friday we hit the highest so far this year, 72 degrees. We had other nice days too. A couple of weeks ago it was so nice that Cindy and another neighbour put together a neighbourhood dinner. It was the first time to eat outside since last summer. Everyone was in high spirits.

WHAT,S UP DOC

Saturday was a very interesting day. For some unknown reason I had lots of thick mucus that made me cough. Fortunately I have lots of toys-I mean machines. The cough assist machine is basically a vacuum cleaner for my lungs. It can be set to just suck, just blow, or alternative. This worked good to get a lot of gunk out, but totally grossed Dave out. Now it was time to try a different machine, the suction machine. This one is basically like the one you have all used at the dentist. With a long wand, called the tonsil grabber, I could get more of the gunk out of my throat.  This was the first time for an unexplained situation like that.  We were both exhausted.
Later we were still able to see part of Walkers soccer game and Sam and Miles T-ball game.

Foot traffic

You should all be proud of me. The previous post and this one were both written on my wheelchair mounted computer. My feet do all the work.

Hoping For Bees

Did you know that the size and juiceness of blueberries is determined by the number of times the blossoms are visited by bees? So all the blossoms on the blueberry bushes may not turn into berries. Bees like dry weather and temperatures above 55 or 60 degrees. Our cherry tree also need bees.  I was so excited about all the blossoms there too, but it may not work out. Sure glad I am not a farmer.

WOW! WHAT A SATURDAY!

Saturday was one of those perfect Portland days, bright blue sky, clear and warm. Well it was warm, and it was our first day over 70. Friday was only our fifth day over 60 so I spent all day outside. That meant that Saturday I was a bit sunburned. I don't know whether it is medication or just lack of exposure that  made me more susceptible. I guess when I played tennis or was on our sailboat I got tan gradually. So Easter morning my face and hands were bright red. But it was really fun watching the boys on Saturday.

This year the boys are playing both soccer and baseball. Walker has soccer and baseball, Cindy is coaching Sam’s soccer team, and Sam and Miles are playing on the same T-ball team. This week all the games were in the morning, so everybody was going every which way. The last few weeks have been pretty easy because of rained out baseball, and soggy soccer fields caused cancellations. All the games were on this week. It's really interesting to see how the kids have improved.

Sunday was another cloudy day with rain often, so it's a good thing we went out on Friday and Saturday. This weekend is supposed to be nice to I really hope so.

Spring ?!?

Finally we have Spring, at least for one day! Maybe the lawn will dry out enough to be mowed.  Unless you live in a Northern climate you won't understand what a delight it is to go outside in the sun and not be bundled up.  I just can't believe that I was sitting outside in shirtsleeves, it was awesome. 


This weekend is the ALS Gala and auction.  Marlene came up from Bakersfield, Kari and Garrett will be here from Eugene and Todd and Cindy will be joining us at the gala.  Marlene had to come up early and stay late because it takes two of us to keep Dave in line.  This is one of the major fundraisers for the association and it always has fun things to auction. 


In the meantime, Marlene and I will try to get into as much trouble as we can.  This might include a trip to the nursery to give Dave something to do in his "spare time".  We might be helpful by walking Quincy once or twice, but we don't want to be too helpful. 


After 28 straight days of rain in March and 5 so far in April, the soccer fields are soaking and the city has cancelled all games.  That means the grandsons are only involved in two baseball games rather than 2 baseball and 2 soccer.  Almost like a weekend off. 


After Dave's dad spent several weeks in the skilled nursing section of his retirement community, he is now back in his own place.  Of course there were restrictions placed on him by family and caregivers, the big one is that he was informed that he couldn't drive anymore.  They also have medication management which takes a big load off of him.  Now he will be back eating breakfast in the dining room so that he gets more nutrition and that one wasn't a battle! 


Just to make sure Dave had enough stress Quincy needed some medical help too!  I think Dave would have run away if he could have, but things are looking  better, Quincy is doing fine, his Dad is better and I'm still here!  And, Sherry makes sure that I'll always be here.  Least life isn't dull! 

Dragon's Back

After updating our computer, my dictation program Dragon Naturally Speaking was not happy.  So we the latest addition.  Now Dragon is back so be ready for more posts.  During that time I have been collecting other new toys that Dave has been playing with.  Maybe I'll get a turn pretty soon.  The first one is Blue Ant.  Its designed for a car visor to hook to a blue tooth phone.  In my power wheelchair I definitely need a hands-free device so with blue ant I activate it with a slight touch and tell it to talk to my cell phone.  Then I tell it what number to call.  If it understands what I say then I'll call you.  If not I'll call someone else and I think I know how to answer calls too.  So if you want to talk to me on the blue ant call (503) 333-4945.

OH SAY CAN YOU SEE

What a surprise,  I thought I wasn't reading as much because holding the book, magazine, e-book etc was hard to do. Instead it was because  my right eye had really changed and I needed new glasses. Amazing what a difference new glasses make!

IT GOES ON

Friday was the day for Dave to see the ortho doc. He was ready to go anywhere after spending the week on  the couch. The instructions had been RICE:  rest, ice, compresion, elevation. Each day the swelling went down a bit, so that made RICE tolerable. His biggest complaint was using crutches. Being an independent person too, he tried to take care of himself and me. At one point Sherry said "Quincy you have the most stubborn parents."

Good news, Dave was approved to use a cane instead of crutches. Since the fibula is a non-weight bearing bone it is not usually put in a cast. With the swelling down, they could feel for any muscle or ligament problems. Finding no problems and with the ankle x-rays clear it is just a matter of letting the bone heal. Pain is supposed to be the guideline.

It is still difficult for him to do some things so we are happy to have help, particularly dressing me and fixing meals.

WE'RE STILL HERE

It's been a while since I have written. We had a great time with TCWSM for Dave's birthday. Those kids are developing a great sense of humor, like both their grandfathers. After dinner at a Japanese restaurant we went back to the house for dessert.Todd turned the heat up just a bit. A little later Cindy remarked that it seemed hot. Dave said he thought it was just right. Walker giggled and said  'Thats because you're old" and giggled again. So much fun when they know how to tease!

Now they are going to have more to tease Dave about, because he broke his leg. I can hear you now, what,when,how etc. He was at his Dad's, and was making a swivel platform for the reclining chair. As he was moving the folding  work bench, he stepped on a piece of plywood that slid out from under him. Now if he had been able to do the splits he would have been fine. Since he is not that flexible he ended with his right leg twisted behind him. This caused the small bone in the lower leg to crack.

So after finishing the platform he went inside and put ice on it. Going to the emergency room was out of the question since it was a special night at the retirement community and prime rib was on the menu. He did take   some ibuprofen and iced his now swollen leg again.  The next morning when his leg still hurt and was still swollen he did call the airline and request a wheel chair at both ends of the flight. He also called for an appointment with our primary care doctor on Friday.

Todd made arrangements for someone to watch the boys after school in case things took too long. Good thing he did as the doctor's office was swamped, the x-ray department had a big emergency and then they needed to go back to the doctors office. After getting the news that  the fibula was broken they also found that the orthopedic doc wanted more x-rays of his ankle. Since nothing would be done until Monday anyway they decided to come home . Fortunately Kari had planned to be here for the weekend so she was here with me.

Saturday morning Kari took us in for the x-rays (no  waiting) and we picked up a few things we needed.  She came to help Dave reorganize the pantry so he would not have to keep running down stairs when he wanted something.  The kitchen had been set up with more  baking pans and stuff for me. He does not do  a lot of baking so by moving those things he had more room for food in the pantry, It was the perfect time to do the reorganization since stairs are hard on crutches.  Kari had more work, but we were sure glad she was here. We really needed  her.                                                                                                                             

QUARTLY ALS CLINIC VISIT

As if the Christmas weekend had not been busy enough, Monday was our regularly scheduled clinic appointment.  This is a four hour or more time where we see the neurologist, pulmonologist, respiratory therapist, physical therapist, occupational therapist, speech therapist, dietitian, communication specialist and the social worker. Just typing all that makes me tired! Since this was Sherry's (my caregiver) long day, and she may also have questions we took her with us.
I always have mixed feelings about the entire day. It is an opportunity to ask questions about all the little things, but it also points out the changes my body is making. I really like the ostrich approach, head in the sand, if I don't say it out loud it isn't happening. The good news is my legs are still strong. The bad news is that everything else is deteriorating. What does this mean? My left arm, even with the bionic brace is not able to do as much. Muscles in my mouth and throat are having trouble with the swallowing process, so I am choking more often. Since I have been using my Bipap 24/7 they don't  even bother to check my lung capacity. The fact that it was at 16% last time may also have something to do with it. :-)
Taking into account these changes, recommendations are made. These include some additional modifications to my wheel chair controls so I can continue to run around and get into trouble. Another suggestion was to have a barium swallow test to see if eating will become recreation. (Not looking forward to that.) Meanwhile they suggested I start using formula in my feeding tube. Previously I had been drinking ensure because it was taking me about an hour to eat. 
One other change was more fun. We are starting to look at speech generating computer programs.  There are programs where you can type in what you want to say, but that is a bit of a problem as my hand is not doing real well. There are also programs that will track eye movements in typing, then speak. Another possibility is foot controlled track ball and switch. I still talk and can be understood most of the time. We are still exploring options. The ALS association communications specialist can get other machines from the manufacture to try.
Good or bad, there are always new things to learn. Looking at how fast some others have progressed, I really am lucky to be changing so slowly.

CHRISTMAS WAS WONDERFUL

I have been slow in finishing about Christmas. The picture of me with "my" boys (Cindy is so good to share her boys) was taken Christmas Eve at our house as was the entire family picture sent in our Christmas card. We had a great evening before sending TCWSM (Todd's family) home and to bed. Kari and Garrett followed a bit later to help with the stockings and to put the presents under the tree. The old folks went to bed in preparation for the next day. Fortunately the boys were willing to wait until we arrived in the morning, about 7:30.  With much excitement we all dug into the stockings. Everybody has stockings like I made for Todd and Kari years ago and have made for the rest. Only one problem, they are really big. Todd has started doing what I did - getting the biggest apple and orange he can find and that doesn't fill the toe. Well it is fun anyway.
After stockings we eat breakfast, then open presents. We open presents one at a time, so it takes forever! To me the most special part this year was Walkers insistence that Mama open the present from him first. Both of the others then wanted her to open their gift to her. When she insisted someone else get a present it was what Sam got for Miles. Soon they became "normal" and wanted to open one of their gifts.  Even with all their usual disagreements that happen among brothers it was nice to see they really cared about each other.
With no snow or rain, we could go outside to play with the new toys. It is so very nice to have a relaxed day with simple food and lots of time to be together. Kari and Garrett were able to stay most of the day and still have time the next day to see his family.

Amma and her boys

MASTER BUILDERS

Tasty

Gingerbread House

After baking cookies with me the boys then decorated the gingerbread house they had made the day before. Each house was a little different as they had chosen where to put windows before they were baked.

such a cutie

Interesting that Quincy doesn't mind his antlers

starting the fun

Christmas Beginnings

What a great Christmas! Our fun started early with our neighbor Wanda wrapping gifts - that really put me in the mood. Then when they brought us dinner Wanda, husband Dave and mother Jean were all wearing Santa hats. Along with dinner they had Santa hats or antlers for us, including Quincy. After dinner they gave Quincy his Christmas present - a squeaky toy.  They giggled as they left while we listened to non-stop squeaks.