Friday, July 24, 2009
Gracie seems to be doing better, she actually was playful yesterday for the first time in a week and a half. No more fevers, all of her cultures and labs have come back negative and we continue not knowing the cause of the fevers. She did start having diarrhea last night and today, but I'm hoping that doesn't keep us here another night.
So now I'm just enjoying letting Grace finally sleep and waiting to hear if we get to go home today.
Thursday, July 23, 2009
It has been a long day and we are just getting settled into our room, so I should sleep while Grace is sleeping. I'll post more details about how we finally ended up here tomorrow if time allows.
Friday, July 17, 2009
Morgan has grown up so fast since Grace was born last summer, she went from this
Last night as we were getting ready for bed, I asked Jason if he wanted to sing to Grace or if I should. Morgan wanted to do it---this is a replay of what happened.
Monday, July 13, 2009
We went up to Mutual Dell on Thursday to celebrate Gracie's birthday with family. It was so great, Gracie loves to be outside and watch the leaves in the trees and just be with family. The video above is a little long and loud, but I knew my sister would want to see it. (the video won't post, but I'll keep trying.)
I still can't believe that it has been a whole year...tonight I was rocking Gracie before bed and realized that she had her first open heart surgery a year ago today. I started crying and looked at Gracie who was staring into my eyes just smiling. She truly is my hero, my inspiration, my motivation to endure and persevere despite what may happen.
Its interesting how you can get so preoccupied with life that I almost forget Gracie is so frail and really could end up in the hospital without any notice. Though anyone could be gone in a blink of an eye, with these sick little heart babies you never know and I think that there is always a fear that they won't make it to see all their major milestones. I guess all I can do is enjoy each day and do my part to keep Gracie healthy and limit the extra stress that is placed on her heart.
On a different note, we had our first Hope Kids outing (a support group for children with terminal or life-threatening illnesses and their families) today. We went to an old-fashion family picnic on Antelope Island. Jason had to work so just the girls and I went and we had fun. Morgan made a cute little friend who is actually another heart kiddo, it was so fun seeing those two play. They walked around holding hands, played 'ring around the rosie,' and shared various snacks---this made me happy on so many different levels, but perhaps the biggest was that it gave me hope, hope that the day will come that Morgan and Gracie will be able to run around and play.
It was so nice to see other families out with their little hope kids (kids with cancer, various transplants, heart defects, etc.) playing and having fun. Life is hard and it is difficult at times to get these little kiddos out but how fortunate we are for a great organization that provides outings.