March 14 / Ranch Time!

Hi ya'll!


Just a quick update before we head off to the Ranch... we are ALL so excited about this trip!  Special bottle of wine going with Peter and I on the airplane...  


Madelyn's counts were fantastic on Monday.  She is in the perfect "spot" for going on the plane:


Hem  37.0    WBC 2.9    Plat 338    ANC 1515


Her liver function is still running high, but in the ok zone.


The Make A Wish Foundation had a Bon Voyage Party with her homies on Sunday.  Here are a couple pictures :)  It will be a well documented trip you can be sure.  More pictures to come next week!

Thought you all might like to read this article being published in the Seattle Children's employee newsletter in which MJ and Sophia are included!  Not sure the images are going to come through on the blog post...

Pool Makes a Splash for Families

by Rachel Hart

You might think that Madelyn Kuhnlein – who will be 6 next week – would dread her monthly visits to Seattle Children’s.

Coming here means putting up with blood draws, needle sticks and infusions. Every third month, it means a spinal tap to deliver high dose of methotrexate, a chemotherapy drug, directly to her central nervous system.

But despite the grueling maintenance regimen to keep her leukemia in remission, Madelyn likes coming to Children’s from her home in Anacortes, Wash. That’s because her parents, Lisa and Peter, fill the family’s trips to Seattle with fun activities, like rock climbing, zoo visits and carousel rides.

Another reason Madelyn and her little sister, Sophia, love coming to Children’s is their post-clinic splashdown in the Therapy Pool.

Most months, Madelyn and Sophia take lessons with swim instructor and lifeguard Tarrah Clausnitzer. Sometimes, the girls and their parents simply dive in and play for an hour.

“We’ve kept up the routine of coming to the pool because we don’t want the girls to associate being in Seattle or being at the hospital with negative things,” says Lisa. “The pool gives the girls something happy to look forward to at the end of Madelyn’s clinic visits.”

Children’s Therapy Pool – tucked away on Train 2 near the Child Life Playroom – is a unique asset for our patients, families, staff and community.

It also offers one of the best aquatics programs in the nation.

Last year, our pool came in #16 in the United States Water Fitness Association’s national ranking of aquatics programs – including pools in all settings, from hospitals to community centers to fitness centers. In addition, Children’s pool ranked in the top five in the following award categories:

·         #1 in Washington State pools

·         #1 in therapy pools nationwide

·         #3 in the number of swimming classes offered per year (an astounding 896 classes in [what year])!

·         #4 in pool-based volunteer programs

·         #5 in swimming instruction

The association also acknowledged Trina Wisdom, director of the Therapy Pool’s, as one of the top aquatics directors in the nation.

Busy all the time

It’s no wonder. Our pool isn’t huge, but it offers an immense and varied menu of programs – all with just two full-time staff members, eight part-time swim instructors and a group of dedicated volunteers.

·         Physical therapists use the pool (bathtub-warm at 94 degrees) to work with inpatients and outpatients from many programs and departments.

·         The Inpatient Psychiatric Unit (IPU) integrates pool time into its daily schedule.

·         The pool offers private swim lessons for patients, adapted swim lessons for children with special needs and group lessons for the children of Children’s employees’ (6 months to 6 years of age).

·         It also offers free swim time every day for patients, siblings and caregivers.

·         Adult lap swims on Mondays, Wednesdays and Fridays and are open to the community for a small fee (it’s free for Children’s faculty and staff members).

·         Schools for children with special needs visit the pool during the school year, day camps come during the summer and community programs for children and adults (like ARC of King County) come year round.

“This is a small pool with very high demand,” notes Trina.

A healthy, fun environment

The Kuhnlein family discovered the pool soon after Madelyn’s cancer treatment began.

“Madelyn started with a chemotherapy drug called vincristine, which causes nerve damage,” says Lisa. “She came to the pool for physical therapy because she was having trouble walking.”

The warm water is an ideal environment for many patients, says Linda Amazeen, the physical therapy assistant who worked with Madelyn.

“In the pool, patients can exercise without bearing their full weight,” says Linda. “It’s a great place to relearn how to walk.”

There are other advantages, she adds. “Most kids are eager to get in the pool, and it’s easy to engage them there,” she says. “For most of our patients, pool time is play time.”

“Invaluable for us”

Some families are frequent flyers at the pool, including the Jefferson family of Seattle.

Six-year-old Miemie Jefferson was born with Angelman Syndrome, a neuro-genetic disorder that is characterized by developmental delay, physical challenges and an absolute passion for water.

The pool offers a kind of freedom Miemie does not have on land, says her mom, Anneli.

“When she is in the water, Miemie doesn’t have to worry about her balance or movement and she’s not shaky the way she is out of the water,” says Anneli. “It takes care of her sensory needs and gives her a tremendous amount of comfort.”

Anneli, discovered the pool about a year ago when she was searching for affordable adapted swim lessons for her daughter. Because Miemie is “totally obsessed with water,” says Anneli, it’s imperative that she learn to be safe in it.

Although the waitlist for adapted swim lessons is long, Miemie and her family found a warm welcome and an open invitation to use the pool while Miemie waited for a spot to open up. Since then, Miemie, Anneli and Miemie’s two older brothers have been regulars at the pool, coming about twice a week.

Miemie needs to be with someone at all times in the water; sometimes her mom is with her, and sometimes she splashes around with volunteers.

“The staff, volunteers and people who use the pool are very friendly, and they’re used to seeing kids with different needs,” says Anneli. “That makes it a very nice place to go.”

Miemie is not the only one in the family who gets comfort from the pool, says her mom.

“When you have a child with special needs, there are a lot of places you can’t go,” says Anneli. “It’s invaluable for us, as a family, to have a place nearby that she can access and that’s also fun for all of us.”

For more information, visit the Therapy Pool page on CHILD and seattlechildrens.org, or check out the pool’s Facebook page.