On Saturday we celebrated one YEAR of wonderful metabolic stability!
In the last 365 days Corrigan was never once hospitalized for hyperammonemia. Can you believe that? After 13 different trips to the hospital, numerous ambulance transfers to Hopkins, a few flights on the Medivac helicopter and many many many days hooked up to stinky meds, all within the first year of his life, we never thought we would be celebrating ONE YEAR! (Can you tell how excited I am?) If you would like to see the numbers on what Corrigan’s first year looked like please visit this post.
Looking through that post still overwhelms me. That was our life for so long that it felt endless. What an incredible blessing it has been to have Corrigan so stable.
Anyway, we called it Corrigan’s “Yay, Hooray Day!” and reminisced the entire day. Corrigan got a new Lightning McQueen HotWheels car (the other has disappeared into the dustbunnies beyond the reach of my ShopVac, I suppose) and a balloon.
We did a little shopping and ran some errands. Connor was near Gettysburg with his Pappy so the special cupcakes that he and I planned to bake together, for Corrigan, will have to wait until later this week but if they turn out, they should be so cute!
Later in the day, after Corrigan had a really long nap, we headed down to Canal Place to watch Uncle Dan and his band, Shakedown Street, perform. It was a beautiful evening, not a cloud in the sky, full of fun music and lots of people.
Corrigan was, as always, a bit unsure in the beginning. His expressions as he takes everything in always crack me up.
Corrigan was moved by the music and danced his little heart out without care or worry.
He hung out in Daddy’s arms for awhile.
He also wore my arms out as well.
But I think that Daddy’s arms are more comfortable than mine…
About an hour into the show, Corrigan discovered some gravel. I do not know how his little knees can tolerate crawling around on rocks but he doesn’t seem bothered by it. Plus, it kept him busy (and in one place!) so that I could actually watch some of the show and not chase him off of other people’s blankets.
Some people looked at me like I was silly for letting him play in the rocks and dirt but Corrigan loves the dirt and it was his “Yay, Hooray Day!” …last year, he spent the day hooked up to IV’s and was really sick…this year he played in the dirt because it made him very happy. Easy choice. Dirty clothes, and dirty toddlers, will wash.
I was afraid that we might not make the anniversary date. Not that it really mattered, a silly date on the calendar, but to be honest…it felt really important to me. I needed to know that Corrigan was capable of living a fairly normal life…one that didn’t involve monthly trips to scary ER’s. Over the last year I have felt the terrifying grip of fear, caused by this disorder, let loose. It has been months and months and months since I walked into Corrigan’s room worried what I might find. We made plans for weekends. We planned parties and picnics. We never added, “if Corrigan is not in the hospital” at the end of every planning conversation. It was assumed that he was going to be fine, until he wasn’t. So far, he has been fine without interruption for 12 months. He has a port in his chest and a tube in his tummy, he takes nasty medicines and drinks nasty formulas but to us... that is just all that being Corrigan entails. Each and every one of those 365 days was never taken for granted. We are so thankful.
We can’t wait to celebrate “Yay, Hooray Day!” 2011. Nobody make any plans for July 3rd next year!