Monday, May 30, 2011

Cloey's Adventures Week 1

Cloey is now officially on Hospice Service. The process was pretty painless considering the circumstances. Ryan House is an amazing organization and and has made the process fluid, our nurse manager who we will be going through for all our needs is a nurse from Ryan House that we love and trust.

The part that stung the most was telling our favorite night nurse, and having morphine and ativan delivered to the house, which we will need to have on hand for comfort control.

Thankfully, Cloey has been pretty stable, she is tired, but we have not seen an increase in her weakness so far. She is now sharing a room with Lainey and loving it. I love tucking my girls in at night in a "normal" room. We don't have nurses anymore either, it's a little odd since we have had someone around at nights for nearly 5 years.

We have been getting mixed reactions from people as they find out. We have mixed reactions ourselves sometimes. Moments when we cry, feel guilty for not spending enough time with her, questioning if we made the right decisions all along for her, soaking in the joy that is her.

I heard a song from Wicked for the first time this week that reminded me of her. My Cloey Girl, You have changed me FOR GOOD


video

Thursday, May 19, 2011

A New Chapter for Cloey

After a lot of time praying, researching, talking (sometimes arguing), crying & pondering Ty and I have decided to put Cloey on Hospice service and take her off the her vent (breathing machine). Cloey is a strong little girl and is still able to breath on her own, we hope that by doing this now we are preventing her being completely dependant on machines. We want to give her a chance to be a kid and to be happy. By putting her on Hospice we are not giving up on her, just making sure we have more control of her medical decisions. We will be avoiding the hospital like the plague and doing as little intervention as possible. We will no longer have nurses in our house every night, Cloey and Lainey will get to share a room, we can take her camping, and Cloey will be Home schooled with her brother and sister. Our first instinct was to quit everything and spend every second and dime with her, but we have decided that what Cloey deserves is a "normal" life. We will continue our daily lives and we are going to do as many family activities with her as we can, I hope you will follow them here as I do my best to update weekly on "The Adventures of Cloey"