The ALS clinic at UCSD has me coming in every three months to see how I’m doing. Yesterday was my appointment and it also happened to be my birthday! Since I have been going to the clinic for about a year now, it’s like visiting with friends each time we go. I am always encouraged because of everyone’s willingness to help us deal with any difficulties we encounter.
Back when we first came to the clinic, I was given advice regarding diet. Under no circumstances was I to attempt to lose weight because that would happen naturally somewhere along the line. It’s a little embarrassing to find that, not only have I NOT lost any weight, I managed to gain a few pounds since my last visit. I blame the pumpkin pie we couldn’t resist at Costco.
My respiratory numbers were only down a little from last time. Not much change, so that was good news. My speech is being affected more and more, though. I am amazed at how well Dragon understands me! Maybe it’s because I can talk so softly into the microphone. In conversation, especially when there is background noise, I try to speak louder and that seems to further distort my speech. (It is also exhausting.) Here’s hoping I can continue to blog this way for a long time. But when the time comes, there are some amazing devices out there that will help me continue to share my thoughts. It won’t be as easy, but at least it’s possible. And that is a comfort to know.
Dr. Ravits spoke to us about the feeding tube again. He recommends that we start the process within the next few months. We’re thinking of scheduling the procedure shortly after the first of the year. I may not need to use the feeding tube right away. But it will be there when I do. I can’t say I’m overly excited about this. But it will make things easier when I can no longer swallow. In the meantime, I plan to enjoy the foods I love!
As for celebrating my birthday, we pretty much did that for about four days! Saturday evening we went out to dinner at one of my favorite Mexican restaurants with our kids, my Mom, and Alan’s sister and her husband. I received a free dessert -flan! – with a candle that I was able to blow out! On Sunday we went to church. Alan took a couple of days off work so on Monday we enjoyed breakfast at IHOP (since I had a free meal coming!) and later visited the Water Conservation Garden at Cuyamaca College. I was there once many years ago but it has really grown and has become a beautiful place to spend some time. I imagine in the spring it is glorious! I see they are constructing a butterfly pavilion that will open next year. We intend to come back and see this! The garden is all about landscaping for the Southern California climate which is pretty much desert. But it doesn’t have to be nothing but cactus. It was a warm day but we found plenty of shade because there are a lot of trees there. It was quiet and peaceful and we enjoyed it thoroughly.
Since we knew we had the clinic appointment on my birthday we relaxed and took it easy in the morning. We weren’t sure about going out to dinner because it can be pretty tiring at these appointments. So instead I waited in the van while Alan picked up some Chinese food and we brought it home to eat. When we arrived home we found two flower arrangements waiting for us on the front porch! What a lovely surprise! But there was more to come! The phone rang around 8:30 and it was our daughter who was at bell rehearsal. She put me on speakerphone and the whole group sang happy birthday to me!! I love those guys!
It’s kind of fun when birthdays string out for several days, isn’t it? And we still have the cupcakes Alan’s sister made for us too! Although maybe I should limit myself. I sure don’t want to put on any more pounds. And here come Thanksgiving and Christmas!
I feel so blessed. Family and friends have made this one of the best birthdays ever. And they give me the gifts of encouragement and friendship and love every single day. Thank you, everyone!