02.09.2017 Posted in Uncategorized 5 Comments

Many folks will remember January 20, 2017 as an infamous US presidential Inauguration Day, but we will remember it as Lucy’s first day of school! And she loves it! No fear, no tears (from Lucy anyway), and barely a wave goodbye to mom and dad on her first day. She only goes to preschool one day a week, half day, but I still don’t know what to do with myself those few hours! We are incredibly grateful to HCA for literally squeezing Lucy into  a preschool class, at a totally random time. Of course we didn’t technically register her last year, but the preschool director told me she would have a spot for Lucy. And the teachers were just as excited as we were to welcome her to school! Violet loves going to school, so of course Lucy wanted to go too! I was convinced Lucy would be terrified and upset by the separation because her life has been so guarded. Hospital time = serious one on one time. Lucy has spent a huge chunk of her life in the same room, often the same bed as me or Josh. I didn’t think she would understand being dropped off somewhere without a parent/family member. I think I’ll always worry about her being behind her peers, but then her teacher said the most glorious thing to me after her second week: “she is so independent”. After all the medical crap she has endured so bravely, I don’t know that I’ve ever felt so proud of her! 

The remaing four days of our school/work week are filled with Lucy asking if it’s her school day yet, and trying to keep her busy. It’s much harder than it used to be, but a lot more fun too. This week we go to Glennon for a port flush and labs. Next month Lucy is due back in KC for a BMA, labs, and follow up visit with endocrinology and maybe allergy. Her food allergies have simmered down significantly, and hopefully will be gone altogether some day. Time will tell. This month she is due to begin vaccinations. She barley got started in the first place, she only made it through her four month shots before being diagnosed, but all stem cell transplant patients have to be re-vaccinated, regardless of age. 

 First day of school. She can’t wait for us to leave. 

    Now we make trips to the hospital just for a med refill. Can your pharmacist do this? We love Dave! 
 Rock climbing at the Science Center

 we went to a kids museum all about healthcare. Like we need to know more about that …  
Pig tails!

   Just eating lunch with new found chopsticks, of course. I finally get to take Lucy on play dates. So good for both of us! Lucy manages to borrow something or invite herself to a snack everywhere we go! She really knows how to work the sad face/cute curly head. 


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