November 25 - Blythedale - Day 6

We started off stronger than we expected as Chloe showed a wonderful alertness last Friday when she first met her therapists and teacher. Over the past few days, though, Chloe has shown a flip in her sleep schedule and has been awake most of the night and asleep during the day. Unfortunately, this makes her evaluations difficult to conduct and her therapists have not been able to work with her efficiently the past two days. We have spoken to her pediatrician and neurologist here and will try to adjust her medication times so that she is not so drowsy from the seizure medicine right before her day begins.

We continue to settle in as much as possible. Chloe is being fitted for a new chair/stroller that will help her sit straight and upright and work on strengthening her trunk and core muscles. Though therapies have been moving slowly, Chloe has shown us once again how strong she is. She continues to lift her head little by little and has been reaching out and loosely grabbing toys when she is sitting in a bouncy chair. Chloe is also able to tolerate more stretches and positioning. With help and coaxing, she is able to settle into sitting positions - straight up and slightly leaning slowly slowly forward for a stretch, lying on her belly even with her G-tube, lying on her side - even her right side which has been the weaker. We pray that once she is more awake and alert during the day, that her therapy sessions will show even more improvement and we will soon witness leaps and bounds.

This week has challenged Chloe and us. It has not been easy changing our life and we struggle everyday to find peace. As we prepare for tomorrow being Thanksgiving, we are hit hard with the fact that we are not home. But, we are so thankful for the many blessings we have been given - for the life we have seen saved, for the love of our family and friends, for the work of her wonderful doctors and fabulous nurses, for the strength we find in each other and in all of you to help us along. Again, saying thank you does not seem enough but please know that we would not be here without all your support.

Thank you everyone! Happy Thanksgiving!

Much love and thanks,

Michelle, Reth, Olivia and Chloe