Em Update
Well I tried to schedule Em's surgery today but the lady is out of the office. We're hoping for a November surgery date. They did tell us we might need to stay in Boston for 2 weeks for follow-up purposes but we are hoping to follow-up here at UVA. We'll see what they say.
I need to work with our insurance to find out how all of that will work. We really feel that she needs the surgery done in Boston. They have experience with CLOVES and we know this is where she needs to be!
As for fundraising, Chris agrees with Tracey, we should try to do the night golf tournament at Ivy Hills. They have a pavilion and have experience with night golf. If we cannot schedule a date this fall, we can always wait until the spring.
As for the non-profit, Ashleigh offered to help to get this up and running. We know we really need something and certain disbursement rules kept me and Kristen (Riley's mom) from jumping in feet first. It will take a few months to create the organization, but once it's up and running, we can offer tax breaks for people when donating money to our cause.
Today, we discussed the need to find a way to educate people about CLOVES syndrome. It's a new syndrome but if you ask a doctor anywhere but Boston, they do not have a clue.
So this is the short-term plan. I'll post another update as soon as I schedule her surgery.
Michael Update
Michael is doing great, he is starting to get on his knees and move a little. Not quite ready to crawl but we're excited that he's catching up.
The boy is also a "tag" boy. If something has a tag on it, the tag will be in his mouth. It's so funny! Tiffany told me about tag blankets so I found some online and had them monogrammed. They came today and He LOVES his!!!
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