Day +664

Wow... look at that! We are at day +664 post-transplant. Sometimes I can hardly believe it has been so long since we were in our little room on Unit 5-D smelling the creamed corn smell of Gracie's new stem cells!

Gracie continues to do wonderfully of course and Mommy has been very busy with school which is definitely challenging and exciting. But it really has been a commitment and has taken me away from Gracie a lot. That part has been a bit harder than I expected. We're all being strong and working it out though and we know it will all be worth once December rolls around. :)

Mommy has Spring Break this coming week, but instead of resting relaxing in a warm, tropical locale, we are headed back to freezing Minneapolis for Gracie's big 2-year post-transplant anniversary! Despite the weather, we're really excited to be visiting with our RMH friends and of course our beloved docs and nurses who took such good care of our girl. We're sad to say that we will be missing our best transplant friend, Rylie, this trip, but we hope to see her next year, and of course we'll give knuckles to all the docs and nurses for her. :)

While we know that Gracie will continue to impress everyone up north like she always does, we have been wondering a bit about her hands lately- her fingers don't straighten completely unless we push them straight. Kids with Hurler's Syndrome tend to have lots of Orthopedic issues, and hands and fingers are at the top of the list, so while the issue didn't come as a surprise to us, we do want to have it looked at to see if we can prevent any further issues. Gracie will be having special testing done on her hands to see if we need to plan for any interventions to keep the problem from progressing. Gracie will also be having appointments with all of her regular specialists as well and we're looking forward to seeing how they think she's doing and if we're looking at any other problems right now. We know that she will probably need some surgical intervention on her knees and hips at some point, but we're hoping those will be down the road a bit.
So while we're really excited to show her off this year, we do have worries in the backs of our minds that some of her issues may have progressed. We're hoping for the best though, and we know that our folks in MN will guide us as we work through it all.
Please keep our friend Wyatt in your prayers for us, he is in MN right now and he is recovering from back surgery. We hope to be able to hang out with him, but he might be heading home by the time we get there. Either way, we pray for quick healing for Wyatt and a safe journey back home.
Please pray for our travels as well... we're flying out on Friday morning.

Much Love.