With so many specialists, scheduling appointments can be tricky
Tedious background music drones on repeat. Or worse, a repetitive voice recording reminds you that the lines are full and your call is important. For…
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My son with liver disease will once again need to take vitamins
There are many aspects of my son Finley’s journey with Alagille syndrome that I wish would stay in the past. One that stands out…
My son’s fourth birthday is yet another milestone to celebrate
Last year, I wrote about celebrating my son Finley’s third birthday. I shared about that day to show that, although Finley has Alagille syndrome,…
My son understands more about his Alagille doctor appointments
Every six months, we see our gastrointestinal (GI) team at the children’s hospital. We’re fortunate to have continued to see the same two providers we…
How I navigated my 2nd pregnancy as a carrier of PFIC type 3
This week I had an appointment with a new doctor to check on my health following my experience with intrahepatic cholestasis of pregnancy (ICP), a…
How I’m learning to cope with challenges as a rare disease parent
Heading into the new year, one thing I’ve chosen to focus on is how I cope with challenges and obstacles in life. The last few…
Fielding my son’s new questions about his Alagille syndrome
I knew the questions that would come from my son Finley one day. We’ve been slowly teaching him about his Alagille syndrome. At almost…
Our daughter’s PFIC diagnosis made us rethink drinking at Christmas
I love Christmas. What’s not to like about being with friends and family, taking winter walks, and eating too much food? My dad’s always been…
Everyday vigilance is part of raising a child with Alagille syndrome
I’m fortunate that my son Finley, who was born with Alagille syndrome, has had relatively good health since his diagnosis and subsequent treatment. The…
Our son with Alagille syndrome is finding it hard to fall asleep
Raising young children entails a variety of obstacles. For me, one of the most challenging is sleep regression, a temporary decline of a child’s sleep.
