No Tricks All Treats
We have been able to stabilize Livy for the most part with a maintenance dose of Dilantin. She appears to be a little more like herself from time to time. Stretching, rubbing her nose, yawning and yes, we are seeing the tiniest of smiles :) She is also exhausted and can barely keep her eyes open. Rest. Rest. Rest.
Jon and I switched roles last night and I was able to get some much needed Hailey time. The time with her flies by so quickly and I try not to get too emotional when I am at home but everything seems so empty when Jon and Livy aren't there. I just try to imagine us all together again.
I grabbed Hailey from school a little early and we headed to the hospital. She was all dressed up in her bumble bee costume. It was pretty cool when we arrived. So many of the nurses, doctors and staff had dressed up and the kids were trick or treating through the hospital. We took the girls around and Livy slept through most of it. They really made it a special event for the kids. Who really wants to be here on Halloween?
As Hailey and Jon started to leave, I felt a tug at my heart. Once again another event in our lives when we couldn't all be together. They walked away down the hall and I couldn't help but cry. I climbed into Livy's bed and that is when she gave me a little "It's gonna be ok, Mom" grin. That's all it took...the hope was back.
And then the best part...Jon and Hailey went trick or treating with my sister, brother-in-law and nephew. They carried around an iPhone and Skyped with us as they went door to door! Livy and I were able to be with them and see everything. That was the best treat of all.
Happy Halloween everyone!
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What a bunch of conflicting emotions for you today. At least it ended with a smile as you could "join" the gang trick-or-treating....a treat to see Livy smile too. Love you!
Looking forward to the day when the 4 of you will never have to be apart again... Love, light and prayers to each of you.
As usual, my heart warms when I see Livy. And Hailey too. The picture of your 2 girls is beautiful. You can see how much Hailey loves her sister. I am thrilled to hear Liv is stabilized. Music to the ears. If you need me, I am here for you, Al. I love you. Take good care.
Just read this and am crying at my desk at work. You are incredible, stay strong and I am praying for you all from Boston. xxoo Maria (Dickinson) McCoy.
The picture is so precious and I totally get the emotional rollercoaster. I had to leave Tess once in Special Care in order to be able to attend one of my other girl's "star" performance in a school play. I cried and cried as we pulled away from the hospital but when my daughter saw that mom had made it to her performance, it was worth it all! Good luck and know we're praying for you!
Thinking of you all at this time and hope you are all back home together asap. Xx kind regards Bron