Stormy clinic day (weather wise anyway)

I remember when chlo was first diagnosed in 2005 and every week we had to go down. Every monday, it was in the begining, and it would rain. All those spring rains would come on that day. I remember thinking that the heavens were crying for our Chloe, and so yesterday was a reminder of that.
Jake was nice to go to clinic for me yesterday, it was stormy and he didn't want me to take Chloe and Rhen in the blizzard of a day. It was nice to have a break and to get out with my good friend Julia. Chloe is doing very well her counts are great so they will start a slooow tapper of her steroids in two weeks. We have a love, hate relationship with steriods. It helps so much with different things, but it alters them and breaks our hearts to see her change shape and personality. We are glad for the tapper.
Chloe asked Dr Pulsipher yesterday if she could go skiing this year, and he said, "well I don't know about that." (thinking of Salt Lake resorts).
So Jake explained where we live. That we only have Beaver ski resort, and during the week there is nobody there. He said "oh I have been to beaver that won't be a problem during the week, there is no one there." (poor little Beaver Mountain, although it is a great place for kids to learn and I guess me too :). She was super excited!! So I added footage of her first year skiing to get her, and the rest of you ski bums pumped to ski this year!!

Having Chloe able to go skiing and go trick of treating, makes me want more. I want her to go to school, maybe for just one day a week or two, with a mask and gloves, of course. But no that wouldn't be safe and so it just won't happen. We were given an inch and I want a mile. And so I have to change my mind set, think of good things. We are on the down hill, normal life hopefully soon. She is doing well, and has lots of energy. I am thankful for that.


I'm pretty sure this was Chloe's first day two years ago with Addie, Jake and Aunt Kins. Chlo was able to watch Addie and picked it up so fast.