Sunday... Day 6

I am writing this post from home. After six days and nights I needed a break. As I was leaving I started to have second thoughts, but Jason encouraged me to go home. As much as I hate being away from Clara, I also hate being away from Madeline. It has been nice for her to spend part of the day with us at the hospital. Usually Clara is in the PICU or because of the time of year kid's are restricted because of cold and flu season, and she can't come at all. So a praise for her to visit as much a she can.

Clara woke again super early and struggled with pain. The pain team changed her Valium from IV to given through her gtube. Which takes longer to work, but lasts longer. She still seems very drugged up. Just opening her eyes looks hard for her, and she isn't very interactive (which isn't like Clara at all). She also is very sleepy. However I have found her best time is in the evening. I know all these meds are so important to help her get through this hump after surgery. However I miss her playful personality, her laugh, and her smiles. I really miss holding her, picking her up and her snuggles on my shoulder. I miss rocking her asleep. We still are reading a lot of books, and instead of rocks I rub her forehead, hair and cheek to get her to fall a sleep.

All these things I miss, are just among some the sweet blessings our little Clara gives us. I read that more than 1/5 of the US households with children have special needs. I think how special it is to be her mommy.

A highlight of today was getting Clara out of the unit for a wheel chair ride around the hospital. When I asked if she wanted to go for a walk, she shook her head NO, but we took her anyway. She gave us lots of smiles, and I just knew it made her happy. We were able to be away for an hour, and spent some of that in the butterfly garden outside. This wheelchair we will take home and will use it inside the house as well as take it outside for walks, and for appointments. Our first followup with Dr. Stone is actually the week after next. Yikes!!

We are going to ask in the morning if we can take her home tomorrow. I think we are ready. I also think Clara needs to be home. She can't tell me but I think some of her whines and whimpers are because she is frustrated and somewhat sad of this complete life change. She needs her room, her toys, her home and her family. I pray they say yes, and we can take our sweet girl home tomorrow.