Today is the day!
Leoparents sign an agreement to move Leo to an at-home ventilation program!
Leo travels home in an ambulance with its siren blaring!!

He spends the night in bed with his parents!!!!

We thank everyone who showed us kindness during our stay on the ward: Ela, Iza, Miss Gosia, Miss Agnieszka, the woman with the Dreds (<3), the woman with the tattoo on her ankle, the man who gave Leo Leojuice, the rehabilitation therapist, the dietician, Miss Ann and many, many other wonderful people whose names we unfortunately cannot remember or do not know, who truly helped ease this difficult time.

Tests show that Leo has hearing deficiencies in both ears
It looks like he will have to use hearing aids,
more machines that he will have to depend on.

The news is hard to accept.

While waiting for Leo to be discharged, Leoparents learn to take care of the wound in Leo’s neck. They pick up the rather unpleasant skill of changing his tracheotomy tube.
With the help of a blue-gray manikin, they learn CPR.
They undergo a tedious psychological exam (!)
and they finally learn how to use all of Leo’s equipment (the ventilator, the pulse oximeter, etc.)

Due to his mom’s nonstop begging,
Leo gets permission to spend fifteen minutes on the ward’s balcony.
Much to Leomom’s disappointment,
this first walk displeases him.

Leoparents reach out to numerous clinics that specialize in CCHS
and to the parents of other sick children—in Poland and across the globe.
Everything indicates that, after all, THERE ARE alternatives for Leo.
In Germany, oxygen masks are commonly used instead of a tracheotomy!
In L.A. and Munich, doctors implant diaphragmatic pacemakers.
One girl with CCHS travelled to Tanzania and India relying on her pacermakers!
The method is new and imperfect. The operation is risky, complicated and expensive.
But it exists!
And another thing: clinical trials are set to test the effectiveness of Desogestrel, a hormonal drug, that could maybe (?) help patients breathe independently!

So after all!
Every curse can be lifted!

Leoparents’ DNA is extracted and sent to Paris.
The tests will show whether their genes caused the disease
or if it happened by chance,
a spontaneous mutation,
a stupid mistake.

Leo’s family should have been home a long time ago, but Leo’s ventilator still has not arrived.
Complicated procedures, papers lost or without the proper signatures,
vacations and conferences, unsent and unreceived emails,
errors and mistakes—dozens of mysterious coincidences
that endlessly put off the long-awaited day.

The children in the neighboring incubator change.
New mothers hold vigil by their sides.
The days are monotonous, long, identical.
The routine of the hospital.

Leo passes time listening to music, getting to know the nurses,
looking at the bee hanging over his bed,
getting shantala massage and acupressure, bathing in a tub for infants, receiving guests.
He does not know that there is a world outside of the stuffy, tight room.
That outside it is spring.

Leo shows what he is made of.
At two and a half months, he does something
that everyone (except for one person on earth)
thought was completely impossible.

He begins to breastfeed!
Naturally, calmly, effortlessly. . .
As though he had done so always.

Leo is victorious!
He won’t have to take antibiotics.

Leo once again is on the brink of pneumonia.
He may have to take an antibiotic…