Thank you all so much for the incredible well wishes last week and messages of hope. It helped us through another difficult week. We continue to feel so blessed by the family and friends in our lives, and everyone who surround us believing in all things Wylder. This was the sky Wylder gave from our back yard last Sunday night as we watched an incredible storm roll in. I have never seen a sky like it before.
This last week I managed to take some time to work on the decorative tiles for Dr. N/TGen Center for Rare Disease Clinic. My mom and I made a fun day of it and tackled the amazing drawings from many of you that you sent our way. Spending the day at As You Wish Pottery is always a treat for me (what a dorker I am). We cannot thank you enough for being a part of this; it really is going to be a “community built center”. I even had the privilege of getting a sneak peak at some of the tiles the kids have done and they are AMAZING! I spotted an Elmo, a ballerina tutu, and even one with photo on it. YEAH! We did the best we could with the designs you sent over and hope you love them.
Our Colorado family was hard at work on their tiles too…. we cannot wait to see the final tiles. Loooooovvveee you sweet nieces and nephews.
It is so hard to believe the clinic is opening THIS week! WOW. The first patients will be seen this Friday. That being said the clinic decor won’t be completely finished until September … but I don’t think those first patients will mind one bit. What an exciting time this is for the rare disease community!
That’s all for tonight … more updates and happenings soon I promise. Steven and I are planning to go to the National Niemann Pick Conference at the end of this week in Baltimore. This will be my first time and I am a bit anxious about it. That being said I cannot wait to meet and squeeze many familiar face who I have only meet online. It is going to be an overwhelming weekend no doubt. Wylder, we miss you and we love you little one. I’ll see you in my dreams. xoxo
Posted by July 28, 2013 10 Commentson