Claire had her best night of sleep last night. Aside from 15 minutes in the middle of the night for a diaper change and a repositioning to avoid bed sores, Claire slept through the night. It set her up nicely for today’s Ativan reduction. She was a little more agitated today but we attribute it to the Ativan changes and subsequent withdrawals.
Having her hair done never helps her mood either. Claire has always disliked having her hair done and that hasn’t changed. We give her a shower every other day and each time Tiffany French braids Claire’s hair: it has been the best way to keep her hair our of the way. The tugging and pulling makes Claire very alert but not in a pleasant way. But she sure does look cute after all is said and done.
We’ve started counting down the days to our scheduled discharge date. Both Tiffany and I are eager to have Claire home so we can get her on a more regular schedule and start being a family again. In the back of our minds, however, we are aware that the discharge date could change. We don’t want it to change and we do want it to change. We want to take Claire home but we also know that if the date is extended that means Claire has emerged from her coma completely and is able to intensify therapy. At the end of the day, we, the doctors and the staff all want the same thing: we want Claire to have as complete a recovery as possible and will extend if that is in her best interest.
There’s not much else to update right now. We’re entering the last two weeks at OCH and it seems the last four have just flown by. We hope the next two weeks yields the most updates. Thank you for all the support.
Our Claire Journal 
Claire, I always hated my hair being done too.
Love and prayers,
Aunt Mary Ellen
I am glad she is getting better night time sleep. I know it is good for all of you! I hope her alertness continues to improve with the removal of the medications. Continued prayers for your family!
I dreamt of Claire last night. She was sitting at mom’s table smiling over at me. She was very close to 100% recovered. She was eating and her arms worked very well as she held her fork.
I pray that this was a foreshadow of what is to come and not just the wish in many people’s hearts. I love that little girl. I don’t know what else to pray besides strength and peace for you, Tiffany, the girls and Nana. Being on the front lines dealing with this daily is draining. I do believe that God will pull you through this. He will pull us all through it and heal our broken hearts.
Psalm 34:18
“The LORD is close to the brokenhearted
and saves those who are crushed in spirit.”
Psalm 147:3
“He heals the heartbroken
and bandages their wounds.”
I pray that you will know that God is near to you and feel His loving presence.
Love you all,
Michelle
Praying that the Father restores your little girl back to you, all for His glory!!!
My prayers continue for Claire and your family.
That picture reminds me of my childhood. I think I might know how she feels…my thoughts and prayers are with you as you move into these next couple of weeks.
We were in OCH for 6 weeks with Bodi too! We still have a feeding tube holder, stands 4-5 feet tall, T at the top for bags on both sides, wheels, and 10 Corflo ultra lite NG enteral feeding tubes size 6FR, 36″. Bodi was only 1yr when he used them so I am not sure if they might be too small for you. Would you like them?