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.