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.