- Oct 17, 2015
- Lost a loved one
So since the diagnosis we have just sorta stumbled one month to the next in sort of a haze. My PAL is now down to 130 pounds (in June he was 155 still against the PEG idea) even after eating a lot the last few days with holiday food. Currently we just scheduled doctor appointments (his naturalopathic Dr) and two weeks ago went on a little weekend holiday (the drive there took 3 hours the drive home was 5 hours due to weather and bad roads). We are going to go to South Carolina for his mother's 90th birthday in three weeks. So we have been planning little things just one month to the next. We have a 14 year old and she and I signed up for a trip to Boston, Philadelphia, DC and NY for a week the first part of June of 2016 And it has already been paid for. It was scheduled back before this ALS beast was diagnosed. What do you do about long term stuff? We have a college graduation in May 2016. This weekend he has slept most of each day, today I think he was up only a total of three hours. We had a very low key Christmas. His sleep study is January 11, and we don't meet with the ALS clinic again until late February early March. The cute/funny thing that did happen was when we were all sitting around the table on Christmas eve. He was helping assemble little paper train pieces for a game. We were all talking (he wass listening) and there was something funny said, a few minutes after that he giggled (like time delay) it happened again a little bit later when we were talking about a bad driver around here. A beautiful smile came with the giggle and I saw a glimpse of his beautiful eyes and he was there for a second and then the ALS face took over.