Best Christmas Ever

Christmas is always a struggle with little kids, different houses, opening gifts at different times, the sheer volume of family and new things the girls get overwhelmed with all of it. We had planned to head up to the Dunes after christmas and stay through new years for some much needed away family time, but that did not happen. Before our little bump in our road started we began getting our house put together and remodeling. The past 6 months our house has been a wreck, with concrete floors and no sink in the bathroom. Yet everything we needed to get it done, except for time and energy. Nick already had the vacation time off so we had some much needed family time getting our house put together! It is getting there. It is so nice to be able to come home and know that soon we will actually be able to relax here.

My mom got the girls snowsuits this year so the day after christmas we went up to play in the snow! It was actually pretty warm though, but the girls loved it. We brought haleys tank but let her run around free until it was needed. I will try and post some pictures. She was up amd running at the beginning but as time went on she just started laying down randomly, you could see her wearing out. We were only out there for maybe 4 hours. Ashley loved just sitting in the snow sipping her coco.

It is becoming more and more often that i look at Haley and she looks ill, black under her eyes, grayish tinted skin, just something off. Its not all the time but there are definite differences with days and times during the day.

Its hard to think about my sweet baby being in heart failure. It sounds so harsh, but I have been ensured that there is no immediate worry. This is what needs to happen in order to get to surgery. It is hard and I dont like it. I am so thankful for oxygen and that it is helping and helps her to feel better. I dont like to complain but I hate to see that tube on her face every morning. It should be one of the best parts of my day. I know it is necessary but i cant help it sometimes. She wears it no problem 92% of the time, but would much rather not have to wear it. So the other night we left her oxygen off after her bath and continued with our nightly routine. I put the girls to bed and went to leave, knowing I would be the bearer of bad news when she hears the machine turn on. Right before I left she called me and then hesitated then said my oxygen. I thanked her so much for reminding me. It was sweet.

The only new things are she getting more tired more quickly, she has had 2 small bloody noses the past couple weeks but trust me thats nothing!

Just a heads up, my friend is having a silent auction to raise money to help fund the research done by the Cystic Fibrosis Foundation to find a cure for CF.  It will be on Feb. 25th. I will post more info later!!!!