The Big Pink Bear

So here we are in 2014 and I am only slightly disappointed we're not all shuffling around on hoverboards by now, but its exciting to begin a new year just the same.  It takes me awhile to recover (regardless of the fact that I was not the patient that day) from the days she has treatment so I'm a little slow to post, but thought I should update on the latest.

Though we're closing in on the one year mark our little Goose is a more than frequent night waker (you could tell time by her 30 minute intervals) due to some tummy troubles so its a team effort to keep her comfortable these mornings. Once at the hospital, Makenna kept us all entertained by pleading with the nurses by raising her hospital bracelet on her wrist to them saying 'Uh!' as if 'Will you help me get this off?' When the doctor told us that results weren't what he expected and we may have to simply wait for new technology to come out (hopefully not as long as the hoverboard lead time) she looked straight at him, down at her leg as she lifted it and back to him, as if to say 'WHAT IS WRONG WITH MY LEG?!?'  But then the time came for the dreaded hand off and it was the hardest yet. The second the doctor left and the nurses came in again she wrapped herself tightly around my neck before Mark had to take her from me and out in the hallway where she went to the nurses reaching for us to take her back. My mom distracted her with some toys just long enough for all of us to keep our tears back before she went through the double doors. But on the other side she made a new friend: a big pink bear that sat by her side during the treatment and snuggled her in recovery. The two napped (NAPPED! Well, for an hour) together in her car seat on the drive home and has been a favorite ever since. We are grateful this still unnamed bear was there by her side when we could not be.

Nearly four weeks out and while improved, results are still a bit less than stellar which means she may just fall into the 'resistant' category (Mark would probably blame this on her Italian side) as we're seeing a slight improvement but still not what we expected since the "bruising" (I don't know quite how else to describe it) was so intense this time. So the future for us now is unknown, but as usual we're doing our research, making contacts and trying our best to do whatever we can for her.

I don't think I spend enough time here, because I'm usually busy living it, talking about how rad this kid is - mostly because I know I just can't do it justice with words. Medical mysteries aside this kid is just amazing. You'd never know she's been through so much or sleeps so little because she is the happiest, nosiest,  most fearless, wonderful little nut you will ever meet. Despite her petite size (8th percentile - what! what!) she is up, down, here, there, swings the highest at the park, wants to play with the big kids, can scale the stairs and scoot down backwards but will barrel over Niagra falls style if Mama is nearby just to test my reflexes. She is a master at peek-a-boo and sorting socks, can often be found with her nose in a book only to lift her head and laugh at the funny parts. Her comedic timing is impeccable, and she speaks at least three languages. She snuggles with Mama and wrestles with Daddy. She is our little love and continues to teach us daily about what life is all about. And while sometimes I feel like we're living from treatment to treatment, those days in between are just so good. Sleepless and a little less intelligent than they may have once been, but wonderful just the same, and we wouldn't trade them for anything.