I hate playing catch up. I always have so much to blog about, but so little time to blog about it. So, in lieu of typing up a super duper long entry, here is a synopsis of what happened that the conference. ;-)
If you read my last blog entry, then you may remember that Niki was better just in time for the National Hemophilia Foundation's "Building Bridges" Conference at the SF Marriott. It was a three day conference that was held from 10/29-10/31. NHF said over 2,000 people would attend and they did not lie. The conference hasn't been held in SF in a long so we felt super fortunate that we could attend our first conference in our own stomping grounds. We felt even more fortunate when we learned that an expert on Factor VII Deficiency would be speaking at one of the sessions.
Some highlights from the conference:
- Finally had the opportunity to meet all of the "Sevens" I've been corresponding with via e-mail. Niki had a special bond with all of them. She liked her "seven family" immediately which is amazing because she doesn't typically "like" strangers. (She's a diva like that.) I finally met Niki's sweet "Grandma B" at the "Women with Bleeding Disorders" session. Grandma B is the reason why Niki is LadyBug. We also saw an "old Seven friend" there too! I also so happy to finally meet the veteran "Mom of two Sevens". She and her boys are absolutely wonderful people! They even gave Niki some gifts. :)
The Bruzer Bunny. It's used to teach young children about hemophilia...
- John and I did some serious networking and met tons of people heavily involved in the community. We attended lots of educational sessions too. And don't even get me started on the free stuff!!! (Seriously, everyone was treated like royalty there!) Each and every person we met was positive and friendly. I even met two more "Sevens" by chance while I waited for an elevator. The networking must have worked because when they approached us they told me that they "heard about" Niki. I suppose we weren't too hard to spot since there weren't too many Asians there anyway. ;)
- I attended a "Parents of Infants and Toddlers" session and the moderator was a doctor I met from Stanford back in March. He knows about our family because Dr. Awesome called to consult with him when Ethan and Niki were both diagnosed. He was so surprised to see us there that he took a moment to talk about Niki and how she & Ethan were both interesting cases. He emphasized how neither one of them should have even survived in utero because their FVII severity is typically "incompatible with life". After the session, he talked to me privately and marveled at how well Niki was doing. He told me that he thought of her sometimes and that says a lot about his compassion as a Hematologist.
- John and I stumbled upon an awesome local Filipino woman (around our age) who is heavily involved in the local hemophilia chapter in Emeryville. She approached us immediately. Asians are already rare in the bleeding disorders community, but Filipinos are even rarer. Of course, she bonded with Niki immediately. (Lol...what's not to love, right?) In fact, my baby girl's new "Ate" plans on taking her under her wing. She says she's going to make Niki her protégé. :)
- On Saturday, I participated in something called the "ClotNot Doll Project". I made two dolls for a traveling exhibit that helps raise awareness for women in the bleeding disorders community. Naturally, I made a doll for Ethan and Niki. I tried to get John to make one but he was "too cool". Lol! I must say it was very therapeutic to make those dolls. (Ya'll know I'm a sucker for "crafty stuff".) After I finished making the dolls, a very nice lady from NHF approached me and asked to take my picture. She also asked me a few questions about "my story" and the link I had to the community. I really didn't really think anything of it until the next day. John opened up NHF's newspaper and there was my picture! It's an awful picture, but nevertheless it was pretty cool and humbling to be in the newspaper. :)
You can SERIOUSLY tell that I didn't think my photo was going anywhere special.
- The Final Night Halloween Event was a blast. I even threw together an impromptu Wicked Witch of the East costume to match the kids. (Being the "cool guy" that he is, John opted to attend sans costume.) Anyway, there was a carnival, live music, dancing, free grub, tons of dessert, Starbucks!, buckets and buckets of candy, professional photographers, a "make your own hat table", and tons-o-fun! The boys even went stage (with a bunch of other kids) to sing YMCA in front of at least a 1,000 people. They were loving every minute of it! There was a costume contest too. The contest participants were picked during the "kiddie costume parade", but the kids didn't get selected. In fact, we were merely watching the costume contest take place when one of the announcers noticed us standing on the side of the stage. They called us on stage in the middle of the contest! And the kids won the grand prize! Our Borders "swag bag" had a Wizard of Oz DVD in it so I guess it was fate! :) Even though he was there in spirit, I still wish the "Scarecrow" was there to complete the moment.
All in all, the conference was an awesome experience. John and I were glad the boys had as much fun as they did. We all had the opportunity to see the positive side of being part of the community. Here's a plus: The boys think it's "so cool" that their sister has a bleeding disorder. They're already looking forward to next year's conference in New Orleans. John and I are too! I'll write more "catch-up" entries soon. In the meantime, here are some pics for your viewing pleasure... :)
The Tin Man and the Lion singing "YMCA"
John and the "Oz kids"...
"The Oz Kids" were a hit that night. :)
The BEST Halloween ever!
Carnival Games Galore!
Our family picture....