Hello and happy Friday to those who keep up with what day it is at all times. I once did. Now, I do when needed but Tony keeps me in check and our calendars in sync so it’s just a quick look away. Dad will be bringing dinner over about 7:00 that Gracie cooked. Friday is usually dinner and movie at home night here for us. Not sure what we’re watching tonight. Embarrassingly too lazy to sift through movie channels and Netflix today so he is going to Redbox. Either Zero Dark Thirty or Lincoln. I saw Lincoln at theater with Mom. Wouldn’t mind seeing again. Neither of us have seen Zero Dark Thirty. I don’t think we’ll go wrong with either.
Everything went well at Emory ALS Center this week. I did get my Biomarker study in and that makes one full year of my three year goal of participation. I feel good about that. Tuesday was a long day. It completed my required three months observational period for the stem cell study also which is nice to have completed. I will continue going monthly even though there is still no 100% positive I’ll make it to the OR. When the time is closer to a surgery date there are several more tests to go through in a short period. These must meet the strict requirements completely or I’ll not enter the OR. It can become overwhelming thinking about it. One, seemingly minor, test can take it all away. For that reason we try not to think about it all the time. Also I tell myself a lot that in the small chance something disqualifies me, I have these months of observation behind me in the case another trial I’m interested in requires that. Of course this is what I’m focused on and it would be a huge disappointment. I would keep moving forward. That’s where I am with this.
I did get some news from Tyler yesterday that it will be further away before he moves back permanently. Probably a full year. It’s for reasons out of his control really at this time. He is going to try to make more frequent trips until then. I’ll continue to look forward to them all and when he’s here for good. Everyone’s life isn’t going to be able to completely change to accommodate my ALS. That’s just the way it is. All I can do is cherish every moment and I believe I have a lot of moments left.
Amanda and Brayden came yesterday. Amanda did a good bit of housecleaning for us. A big help to Tony. I visited with Brayden while she was busy. Now that he’s a full-fledged walker, It’s a different experience from the days of him lying on my chest. As we all know, they grow so fast. After Amanda finished we ate a little while discussing her recent Indiana trip and other things. More cherished moments.
Everything is actually going well right now. That makes everything easier to take in, keep in context, and just live in the moment. I hope for it to stay this way. Surely those pesky, frustrating minutes will pop up here and there but, in the big picture I feel ALS content, if you will.
Speaking of minutes, it won’t be long until dinner arrives and showtime starts. I just learned we’re watching Zero Dark Thirty. I need to get a couple of things prepared so I better get to it. Thanks for reading. I’ll be back with more soon.
Until next time, take care,
This article was written by April