Friday, April 27, 2012
Today was a blessing with a bittersweet twist. She slept all day today, except to wake long enough for us to wet her mouth and for her to find her nose and rub it with the strength she could muster. I thought she might rub it off this morning! We put a sock on her hand early this morning because every time she woke up a bit over night she would go straight for her nose, and inevitably in rubbing her nose she would find her ng tube and fixate on it, trying to remove it! She has always been one to rub her nose as she's falling asleep, and I have often wondered how it doesn't hurt her, but she's taken it to a new level now! She worked her nose over so much that it was red this morning! Since she was so determined to rub her nose, we thought if we put a sock on it it would keep her from getting a hold of her ng tube. Ha. Piper's personality and determination showed through again, baffling not just her doctors this time, but even Jordan and I. We sat there watching her whine at it, rubbing her poor little nose when it was as if the light bulb went on and the sock went into her mouth. She chomped down on it, barely missing her fingers and she pulled her little hand for all she was worth! Success and freedom simultaneously! She was free of the sock! It was more than I could do to put it back on! But that meant I had to watch her little hand like a hawk until she fell asleep. We ended up putting the sock back on a few hours later after she successfully got a hold of the ng tube and pulled it out about 3 inches, with at least 3 of us watching! She pulled the sock off again 2 more times. As adorable as it was to watch these antics, it was not without whining. Awake = whine. As I write tonight however, she has not been awake since this morning. That means no whining, but also, less Piper time somehow it feels. I am relieved she is more content, but I miss her! Ah, the times we have enjoyed! We have been able to cuddle today again though so my heart cannot complain. Whatever combination of where she's at and the medications she's on worked to create more contentment for her, less irritation with being touched and more peace for me as the gap my arms felt the last two days is temporarily filled.
I have to go now as it's my turn to hold her again so I'm off without fine-tuning this post, but I wanted to let everyone know where we are at today. Thank you for your prayers for peace - they are working! And to any parent who has ever had to watch their child suffer for long periods of time, I must admire your faith and endurance!!!
Monday, April 23, 2012
Friday, April 20, 2012
Wednesday, April 18, 2012
Tuesday, April 17, 2012
Monday, April 16, 2012
Sunday, April 15, 2012
Saturday, April 14, 2012
Thursday, April 12, 2012
My favourite moments from today so far...
- When Peyton snuggled up to me in bed this morning as I caught a few moments of sleep after my shift with Piper and before Peyton was off to school. It's a wonder to be loved by a child!
- When Piper calmed immediately as I leaned in, cheek to cheek, close enough to smell her and for her to smell me.
- Painting Piper's little toenails pink! I have loved every minute of having a girl!
- Watching so many of those we love love on our little girl!
Wednesday, April 11, 2012
Tuesday, April 10, 2012
Sunday, April 8, 2012
What do you do when you are given months to live? I imagine I would want someone to love me like crazy, to make me laugh until my sides hurt, to help me live like there's no tomorrow and to be near me, providing comfort. Would I want them to mope around me? Not really. After her diagnosis, and really, long before it, we took this approach to her life. We have capitalized on every moment! I hope to share many of these moments over the next window of time.