Katie’s Family Uses Short Term Stays to Balance Family Life

When Katie  Frost sees her red travel bag she gets pretty excited.  She loves spending time at New England Pediatric Care.  Her family calls it “Katie Camp.”

Katie Frost enjoys watching her siblings perform in the marching band.
Katie Frost enjoys watching her siblings perform in the marching band.
Her mother Sue says she uses short term stays at the NEPC to balance the needs of all four children: Andrew, 18 Katie, 16, Emily,15 and Carly,10. 

Doctors told the family Katie would not survive after being born with fluid on the brain, but after multiple shunt revisions she is able to live in the family home.  However, she experiences frequent seizures, is non-ambulatory and totally dependent on others for everything.

The Frosts included Katie in all her siblings activities, but as she grew it became a challenge to transport her and she was sensitive to some environments.  There were conflicts, too. Someone had to stay behind when Andrew and Em’s marching band performed at Disneyworld, because Katie can’t fly; family vacations in Ocean City had to be put on hold, because Katie can’t tolerate the sound of surf. 

Then a family friend volunteered at NEPC and discovered short term stays. The family applied and discovered that Katie enjoyed her short “vacations” complete with a swimming pool and a staff attuned to her special needs.

“It’s her time,” said her mother. “When she’s there we do things she can’t do.”

So when Andrew went off to college this year, both parents attended the orientation.  When husband Matt went on a business trip, a short term stay made life manageable for Sue, Emily and Carly.

“We all love having Katie home. . .but I can’t do the same things now that I did at 35.  We are so lucky we have this.”