Well Hello Everyone! (Karen here)
Just a quick catch-you-all-up blog. We realize it has been a while since our last post... (yes, we know this is a familiar refrain!) Maybe the first thing we should do is take you all back to a time, back in March, when Dr. S. said “we measure progress in weeks.” That was such a true statement... 6 months ago. But more and more, we realize we are in a place that measures progress by month. :( Not great, but, continuing in our enduring efforts towards positivity, progress should be acknowledged as Progress. Forward motion is forward motion. Yadda Yadda.
Basically, Tony is SLLOOOWWWWLLLLYYYYYY feeling better in most ways. Eyes are improving, incrementally. His pooper is inching towards some little bit of better (not much! But still a little.) We are on a steroid regimen of 5mg every other day now, that's down from 60mg a day back about a month ago.
Back at the beginning of the August, Tony began working full time. That is still happening – YEAH! However, he is SOOOO tired each day after work. Tony is ridiculously tired – like not even enough energy to get his own water or load his cup in the dishwasher. What's really funny – only if you are not me – is when he looks over at me on a weeknight and says “We should paint the bathroom this weekend.” Totally serious and believing that a job like that is completely feasible. Hello – are you kidding me??? I tell myself to remain calm, take it one step at a time, just go with the flow. The next day, he is over that plan. For now! Whew!
Also, in the interest of progress and news for you eager beavers. Tomorrow is Tony's +200th day. Back in February, we had these GRAND plans that Tony might be ready to do a little hike in the Grand Canyon by October. Whoa, what a couple of dreamers we were. But, still. Maybe later for the Grand Canyon, huh? At least we can say, “maybe later.” Right?
One last note, today we received a FABULOUS bunch of flowers from a great couple of friends, telling us to keep going forward and to look ahead to fall. We will. THANK YOU Ambika and Guru! Thank you everyone. Here we are, looking forward to the Fall.
Love you all – Take Care – Karen and Tony
