Friday, January 8, 2010

A new year... part 1

So as 2010 has arrived and we've kept plenty busy. Gracie has been doing so well and has enjoyed an exciting holiday season. We attended 2009's MPS Family Conference last month for the first time and we really enjoyed it and learned quite a bit. The conference was held at Disney World this year so it was a pretty easy trip for us. We participated in a focus group for Genzyme (the company which provides the synthetic enzyme which Gracie received while being prepped for transplant), and then spent the next few days attending sessions specific to concerns that affect us directly- post-transplant issues, what to expect in adolescence for MPS kids, emerging research and treatments, and reproductive issues regarding testing and other options available for when we choose to have another baby- all very informative sessions. Gracie got to hang out in the provided childcare room while we attended these sessions and she really loved it. She really loves being around other kids, and we were really pleased that she took to the caregivers so easily. Never once did she cry when we left and I think the leaving was actually harder on us than her. This part of the experience has given rise to the idea of possibly putting Gracie in a childcare/school program soon. We're still thinking about it, and of course we need to be sure that all of her immunizations are up to date before she goes. Hopefully we can get that yucky business worked out soon and then explore some good options for her.

Also at the conference we were able to meet and spend time with other MPS families, which in my opinion was the best part. We got to hang with old friends like the Blancheri family and little Wyatt, and Danny Latham and his family as well. We met new friends too- I enjoyed spending time with Bella's mom, Elizabeth, Erica- an adult with MPS 1, and Brinley and L.B.'s moms- Mandy and Michelle, who after 5 minutes time felt like sisters to me. While the reasons we have been brought together are difficult, spending time with these people who know exactly what we're going through is such a comfortable and easy thing.

We spent the last 2 days at the Magic Kingdom and Animal Kingdom where Gracie succeeded in shutting both of the parks down. She rode a few rides and saw some wonderful parades and spent the day in the Animal Kingdom with our beloved "Aunt" Bee (aka Godmother Laurie) and just all-in-all really enjoyed ourselves. While some of the sessions gave us a hardcore reality check regarding obstacles to come, we still are so thankful for the successful transplant which saved our precious girl's life and we will face whatever comes with the same hope and determination, and with the unwavering love and support of so many loved ones.

Stay tuned for part 2- lots more to share!