time flies when you are having fun

It has been a while since I posted. All is good. Last Monday was the regular clinic where we see doctors, therapist, social worker and anyone else they can think of. Just in case you were thinking about getting in my way my chair with me in it weighed 512 pounds. After the 4 hour marathon I am always tired. Good thing a follow up letter is sent. Then the fun started. My sister and brother came to visit for three days. She flew up from the L.A. area and he came from Wisconsin. Some things never change when we get together, but we laugh at our individual mannerism now. We actually had a few sun breaks and managed to get a walk. Quincy was pleased. It was a good time for lots of talking and hanging out together.

pride goes before a fall

Last Sunday the sermon was about all of us wanting a close community around us on one hand while at the same time we keep people at a distance by only showing our good side. I hate it when the sermon hits close to home. :)

So this is what I was not going to share. My new foot petal does not fold out of the way so getting out of chair is more difficult. I also had to move two pressure sensative switches to the inside of my arm rest so I could press them with my thumb as my fingers could no longer press them. Even though I knew it was a hazard I developed the habit of straddling the foot petal when standing. That proved to be a mistake.

Yuki was helping me out of my chair when my pant leg caught the foot pedal pushing me forward. As I went to my knees I sat on the pedal and the chair jumped forward running over my right leg. While I was getting out of the chair, my hip hit the on/off button and turned the chair back on. Yuki quickly turned the chair off (again) and straightened out my legs. She had me sitting up on the floor and ran to get a phone. About that time I started to roll sideways because I have no upper body muscle strength, and lay flat on the floor. Hearing the clunk of my head she ran back with the phone. She wanted to call 911 to get me back in my chair but I said no (I know that was dumb). I thought Todd would be here soon so asked her to call him. His phone didn't pick up but we left a message. Then Dave came home earlier then I expected. The two of them put me back in my chair and we all breathed with relief. That is until I said I still had to pee, which was the reason I was getting out of the chair in the first place.

I guess it isn't all bad if we learn something. 1. We put a phone in the bathroom programmed with emergency numbers. 2. Next to the phone is an information sheet with address, phone number and nearest cross street. 3. Caregiver Cindy said she was older and meaner, so she would call 911 no matter what I said and I think Yuki will too. 4. Maybe I won't be as stubborn next time since I was chewed out by everyone. Just remember to be close to people you have to share the dumb and silly things you do. Now it is your turn.

rough day for teacher

I wonder if teachers will be able to get anything done today. All morning we have had a mix of rain, light snow and big fluffy flakes. About 10 minutes before school started so did the snow. It was big fluffy flakes again and it started to accumulate. How do you settle a group of kids under those circumstances?

Variety is the spice of life

Our morning started with light snow, just enough to leave white film on some surfaces. Then rain,snow and clear all took turns. At lunch snow showed up again, with big fluffy flakes that stuck. As I was getting excited looking out the back door I noticed blue sky through the big pine tree in our neighbours yard. Sure enough we were soon in bright sunshine.

Quincy is back

It is sooo nice to have Quincy feeling great. How can we tell how he feels? First he started to pay attention when someone went to the kitchen, then he actually ate his food and was interested in going for a walk. Tuesday was a red letter day. We could say Quincy squirrel and he would run to the kitchen and have to make a hard right turn that sent him slipping and sliding down the ramp. At the bottom of the ramp this is repeated as he has to make a hard left turn to go through his dog door. We had not said anything because of his back. On Tuesday he spotted a squirrel and went slipping and sliding out. We were excited to see his interest but a little worried he would hurt his back. No need to worry he was fine and went running after a cat next. Since he looked recovered we made an appointment with the groomer. He had not had a haircut since mid-November and his were almost covered. After his hair cut he really looked cute. And we could see his big brown eyes. All this was good, but the final way we knew he was fine happened this morning. As soon as caregiver Cindy came in the house Quincy ran to get a toy and wanted to play. That was our Quincy, thinking the caregivers were here for him.

Hey Look at Me

Many of you have not seen me in a while or last saw me with the bipap mask on. The mixed blessing of not having the bipap mask is now I have to comb my hair. Poor Dave has another job that he is really not comfortable with! (At least I go out to get my nails done.) The only morning we don't have a caregiver is Sunday so he has to comb my hair before church.

If any of you have an iPhone or iPad and want to take a stab at reading my lips, you can call Dave's cell and use "facetime" to talk to me. That is sure to drive Dave crazy. Sounds fun doesn't it!

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.