I was sitting there in my beach chair, toes dipped in the water on the edge of the lake, watching my boy splash and play in the water, when a memory from my childhood filled my mind and brought tears to my eyes. The previous hours had been oddly exhausting and I found myself praising…
“Go away, you big baby” she told him and then ran away quickly. We were at a playground and I was only feet away, trying to stay close enough to Corrigan in case he needed me, but also out of the way as to allow him some space to explore this new friendship on his…
Remember I said that Corrigan was all fixed up (metabolically) until he caught a virus or something bacterial? Yeah, he made it one week. Saturday morning he woke completely congested and choking on his own phlegm. He went to bed totally healthy and woke sick as a dog. *sigh* But that is the risk of…
Christmas was great. It really and truly was. I had no expectations going into this holiday, things have been so up and down with Corrigan’s health there was no time to dwell on anything else really, so when he woke on Christmas morning fully engaged, filled with wonder and awe, and in one of the…
It is a beautiful wintry day here in the mountains and I much prefer to watch the snowflakes fall from my own windows, rather than the flakes that fell in Baltimore last week, though it really was a lovely view from nine floors up in the hospital too. That sentence structure was awful, but I…
Many of these are repeats but all together show the story of this particular hospital admission. It’s not the prettier part of his life, but it IS his life. You get to take photos of your child on Santa’s lap and at amusement parks, I get to take photos of mine on ambulance gurneys and…
Now that Corrigan is stable, and the crisis is behind us, I can stop updating the previous post. His last ammonia was 30 and today they will wean him from his rescue meds and move him back to home medications. There has been a downward trend in his branch chains over the last few months,…
Little man became very sick on Saturday from his disorder. His ammonia reached 295 and he was transported to Johns Hopkins last night. We were joyful to learn that rescue meds worked to bring his ammonia down to 57 by midnight however it has been slowly creeping back up today to the 150′s. Corrigan has…
“Hey, what’s your name?” one little boy asked the other. ”Run! Run!” the older boy replied, as if he didn’t understand the question. ”Wanna run with me?” the younger boy asked. “RUN!” the other exclaimed. The younger boy seemed slightly confused but just shrugged his shoulders, smiled and said “okay! let’s go!” And they ran…
Corrigan is excellent at labeling the things in his world. His vocabulary is far larger than ever imagined and he surprises us daily with what he knows about the things that he sees. He has excellent eye-sight and can spot the handicapped symbol on any moving vehicle and yells “chair!” (several of his classmates are…
