Routine is a huge part of the daily life of raising kids. They make the day go more smoothly, helping everyone know what to expect.
Be Rare with Finn - a Column by Jay Sandstrom
ALAGILLE SYNDROME
ColumnsGiving ourselves grace amid a hectic schedule and missed appointments
I wish raising children would come with a checklist. Every day there are so many items to check off in addition to work and staying…
ALAGILLE SYNDROME
ColumnsWhy community is important for parents of children with Alagille
I normally reserve this column for sharing stories about my son Finley, who was born with Alagille syndrome in 2021. Obviously, he deserves the…
ALAGILLE SYNDROME
ColumnsWhile treatment has helped my son, the itch never entirely fades
If you spend enough time around something, you’ll start to notice it less and less. But that’s not always the case with our 4-year-old son,…
ALAGILLE SYNDROME
ColumnsThe value of the yearly pediatrician appointment
For our family, the early months of the year are the season to visit the pediatrician. With both of my boys born in this period…
ALAGILLE SYNDROME
ColumnsWith 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…
ALAGILLE SYNDROME
ColumnsMy 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…
ALAGILLE SYNDROME
ColumnsMy 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,…
ALAGILLE SYNDROME
ColumnsMy 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…
ALAGILLE SYNDROME
ColumnsHow 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…
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