It's been a month of new learning for us! Jason and I were able to take our daughter to Milwaukee this month for the PHACE Family Conference. It was hosted by the Wisconsin Children's Hospital and was more than I could have ever imagined. There was not a cost to families for the conference, and the resources they provided to us were amazing! The 10-12 specialists there gave of their time to come and share with us. They were all incredibly kind to stick around and allow us to ask specific questions regarding our own children and their individual stories.
Some exciting things:
1. Our daughter's first plane ride...she did GREAT!
2. Some fun in a new city...we stayed one block of off Lake Michigan and took some time to eat dinner at Miller Park (wouldn't you know it, the Brewers were playing the Astros in Houston while we were there)!
3. Great weather...on the warmest day, the high was 68 degrees!
Some things we learned:
1. Doctors from around the world continue to collaborate regularly to create medical protocols to help families who have children with PHACE Syndrome. There is LOTS of research going on right now and 5 new articles have been published this year in medical journals.
2. Genetics studies are happening right now. The three of us were able to donate blood and be a part!
3. Through conversation with a specialist, we were encouraged to begin using our daughter's Timolol eye drop on her nose and lips to hopefully reduce the redness in these areas. This idea had never crossed our minds.
4. We are truly blessed to have the medical team who has been collaborating to care for our daughter for the last 8 months. We heard stories from families who have to truly fight for care for their children. Because of this team, our daughter began receiving care before she was three weeks old. We will never know how severe her hemangioma could have grown without this level of care!
5. Grammy & Grampy have enough energy to spend 5 days with the boys while we're out of town!
This photo was taken of the conference participants. The older children are sitting on the front row and many of the babies are sitting in their mother's laps on row two.
