Wednesday, March 30, 2011

10 years old!

Happy Birthday Cloey! I can honestly say I never thought this day would come. Cloey is such a sweet YOUNG LADY. We are so blessed for 10 years spent with her sweet spirit. Her birthday was a lot of fun, and if you have talked to her in the last 6 months you know she was looking forward to "being 10". She really wanted a sleepover with "pajamas and scary stories". So, since she has a nurse and needs her breathing machine at night, we decided to have a pretend sleepover. We played games, painted nails, ate chocolate chip pancakes and of course wore pj's and told scary stories. Cloey had a lot of fun. I have learned that Phoenix Children's Hospital is working on changing the term Do Not Resusitate (DNR) to Allow Natural Death (AND) so I will be using that term from here on. The last six month since we signed the modified AND, have been, well, different. Luckily Cloey really did not get sick this winter. But, it was humbling to come back and see all of her doctors and tell them about the AND. Some were visibly sad, some tried to think of something else to try & came up with nothing, some said nothing at all. But all have been supportive. I kinda wanted at least one to completely disagree and have some other option for us, but it didn't happen. Our doctor's appointments have been so strange compared to before, real laid back. Her 10th set of ear tubes that we had placed less than a year ago are out, and the doctor was like, "well I don't think her ears hurt right now, you want to just do nothing and spare her the surgery?" and if Cloey doesn't want to do something, everyone is just like "ok" She's the boss. My nursing and caregiving help has increased, giving me more time to do fun things with Cloey instead of just taking care of her needs. The sad development has been Cloey's increased dependance on the vent to breath. We are using the wheelchair more, limiting outings, having to go home and give her a "break" on the vent more often, she is more sedentary and will sit on the bench with me at the playground instead of play, she is unhappy more of the time, the nurses are seeing more dependance at night too. This is all weighing very heavy on our hearts. We are meeting with some of her doctors and care team and trying to make some REALLY tough decisions to keep her the most comfortable. The stress level in our marriage and family is at an all time high. We are trying to make impossible decisions, and still have all the everyday craziness of work, school, the house and the kids to take care of. hug or giggle from that girl and it's all worth it, and we are lucky enough to get them everyday : )

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