Busy Feet

Now that my arms are not working so good, my feet are doing double-time. These pictues can give you a good idea of how I can communicate and drive. My right foot controls the mouse for my computer while my left leg does double duty. It is responsible for the click for the computer and driving. Driving is the new job. The foot pedal controls forward and backward motion and is the steering mechanism.

Along with my new driver I also got a new display to indicate seat adjustment and speed. The most exciting new displays are the speedomoter and odometer. I had asked for these before but had been told they were not available. It would really be interesting to know how many miles are on this chair. I am on my third set of tires and second set of batteries!

Not a big deal

Well, I survived the trac change. Since this was the first one I did decide to take the offer of a little sleepy stuff. That involved the use of IV which is very hard, plus they wanted some blood for several tests. Dave and Yuki said the change went very smooth and looked easy so maybe next month I will be brave. Everyone is very interested in the outcome of the two thyroid panales as I am always hot. Half the time I am barefoot and I am wearing short sleeve shirts and everyone else is freezing. Apparently a possible side effect of ALS can be hot flashes,but I tend to be warm all the time with an occasionl hot flash. Any one need a warm vest?

another good day

Today was our monthly ALS support group. Last month it was the day after I had the gall bladder surgery and before the tracheotomy. There are always some new people but also plenty of regulars. It was really good to see everyone and I had lots of great welcomes. These are people who really know best what the hard choices are. Now it is time for my next adventure. Tomorrow I will have my first trach change. I must admit that I am a little bit nervous. The doctor wants to do the first one at the hospital. This is done on a monthly basis. They say in 6 months Dave will be able to do it at home. Now on a happy note. Quincy is doing much better.He even ate some dog food. Had a little bribe to get him started but he did eat. He is still on some meds so is pretty mellow. At least he is walking a bit and his tail is up. Dave gets to take him to the veterinarian tomorrow. With all this medical stuff it is no wonder Dave gets tired.

did you see the rose bowl

The day started out good with Quincy a little more active and interested in what was going on the kitchen. He still didn't eat his food so Dave scrambled an egg for him. Now that was worth eating. Meanwhile I watched the Rose Parade. It was a beautiful day, the kind of day that makes people wonder why they do not live there. A text from Daves sister Mary saying she was at the parade wearing a tank top. Oh yes we remember those kind of days sitting on the parade route, but usually we did have to start with a jacket. Then the talk at the Rose Bowl started out with speculation on the effect of the heat on the players. I still like living here even if it rains a lot. That is why everything is green. We had a fun time watching the game with Todd and Cindys clan. They all enjoy football with Miles, the youngest, the most interested. Everyone enjoyed this game.

Somewhat normal

Today, January 1st, is the start of our new normal. Dave was able to get me ready for church and my forth outing. It was so good to back. It was also nice that it was a smaller group. I really felt the love and carrying of every one there. Of course my computer talking for me was very interesting. We did learn we will have to allow a little more time to get me ready. I did say church was my forth outing, well what were the others? Doctor visit was the first, second was going to a neighbourhood children's book store on Christmas eve to get a book for each of the boys. Dave, Kari and Garrett all went with me. At least they left my to go bag and portable suction machine in the car that was parked right out in front. The real adventure came last Thursday when I had my nails done. This had become a real necessity as it had been more then a month since they had been cut and they were driving crazy! My caregivers are CNAs and they are not allowed to cut nails. Dave would rather not cut them, so a pedicure and manicure became necessary. Cindy was working that day so she had the privilege of lugging all my stuff. This includes the portable suction machine, an amby bag that someone could use to keep me breathing if the resperator failed. In addition there is a bag of other small things that are reccomended to be available at all times. So you can see going some place with me requires lots of effort. As we do more it will get easier and it will be a new normal. With out all the technology I would not be here or if I was I would not be as happy. I am very thankful for the chance to watch our wonderful grand-sons develope into such interesting and different individuals. All of my family is also very special to me along with lots of great friends.

one more thing

After a wonderful Christmas we were setteling in a nice routine when Quincy developed back problems. Thursday evening he was very restless and could not get comfortable. When Dave lifted him off the bed he yelped. We were able to get into the vet on Friday . After checking him all over and refereeing to X-rays taken last March he was given some muscle relaxants, ant-inflamatory drugd,and some cortisone. He spent most of the afternoon lying on the floor of the bathroom in front of the heater vent. Hearing his occasional moan was heart breaking. That night he was even worse. Saturday when the vet call and Dave said he was worse they had him back in. This time he was given IV medications that really knocked him out. The goal was to get the muscle to relax. It worked, when Dave brought him in he looked like a wet rag. One of the boys said he looked dead. Not a cheery thought. On Sunday morning he was a little better but he still had not eaten much. Sunday evening he was even interested when some one went into the kitchen .Dave gave him some canned dog food that was supposed to be easier on his stomach. Dave, Yuki and I were all watching him to see if he would eat. Quincy looked at us as if to say do not stare at me. Tonight things look much better.

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.