England: The BBS Conference in Northampton
So the reason we went to England in the first place (see the first part of our trip in the last post) was so that we could attend the BBS…
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A Day at the Children’s Hospital with a Special Needs Child
There’s not much that makes me more thankful for general health than a day-long trip to the children’s hospital with a special needs child. I wanted to keep one of…
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Doctors, Experts, and Becoming Your Child’s Biggest Advocate
I have learned that special needs parenting is one of the hardest and most humbling journeys a family can walk. This is a raw, honest snapshot of where we are…
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My First Bardet-Biedl Syndrome Conference at Duke: Finding Unexpected Hope
Speaking of good doctors, I never wrote about the Bardet-Biedl Syndrome conference we went to back in June. And that’s no good, because it was really an amazing experience —…
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Potty Training a Child with Special Needs: Lucy’s Story
We have spent the last week-and-a-half camping out here: Nice accommodations, right? Yes, sitting on that hard-wood floor there is very comfortable. Lucy’s Potty Training Journey This girl has given…
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Lucy. A BBS Syndrome Diagnosis
Nothing can really prepare you to get a phone call from the geneticist telling you that your child has a really rare genetic disorder. That was the day we learned…
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We Are the Experts: Trusting Your Instincts as a Special Needs Parent
Trusting your instincts as a parent is hard. But even more difficult when your child has a rare syndrome and you’re surrounded by specialists, second opinions, and an endless stream…
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Lucy has TEN toes
One of the most common physical markers of Bardet-Biedl Syndrome (BBS) is polydactyly — being born with extra digits. Lucy came into the world with eleven toes, which is actually…
