We have had a beautiful summer. And we have been embracing every delicious moment of it. Sunsets, boat rides, sandy beaches, S’mores, and lazy days in the sun. Things were going just as I hoped they would.
As usual, ALS has to remind us that it is here, ready to rear it’s ugly head.
First off, we had a visit at our ALS clinic at the beginning of July. Things went so well. Much better than we had expected. We were riding a wave of joy. No progression in 8 months! Scott’s legs were the same, his breathing, miraculously the same. A slight change in his diaphragm strength, but that was it. It was the first time in 2 years we left an appointment happy.
Unfortunately, the wave we have been happily riding has crashed. I guess all waves do, don’t they?
Chewing and swallowing have become really difficult as those muscles are weakening. It’s very easy for Scott to suddenly choke so he has to be very careful when eating. He has choked a few times but we have always been able to get through it. The other night though, he choked so badly, an ambulance needed to be called. Thankfully his airway cleared on the way to the hospital, but it was scary. It was so scary.
We have known this day was coming, but you know you always hope that it stays in the very far future.
For now we are blending, grinding, pureeing everything. He eats very concentrated and very slowly. And we are doing more and more tube feedings.
We know where this is all heading. We are just hoping to delay it’s arrival for just a little while longer.
After all, we still have a lot of summer to enjoy.