Leo meets a healer from India.
Mr Indian has never heard about the curse, but promises to pray for Leo. 

He gives him also 1,5 litre of holy water (he has run out of smaller bottles)
in a plastic bottle of “Jurajska” mineral water.
Well, we’ll see…


Leo starts to suffocate. 

His chest caves in, skin gets pale in almost no time, and limbs get flabby.
No one knows what’s going on. Tracheotomy suction doesn’t help.
Leoparents decide to change the tube, as it is probably clogged.
The action takes a few minutes that seems like eternity…


Maurits Cornelis Escher, Eye

Finally some good news: psychologist has positively evaluated Leo!
Not only is he on a development level adequate to his age,
but he is also very creative, musically gifted and communicative :-)
It is a miracle given he has spent half of his lifetime in a hospital,
and a third of his life in a coma!!!

P.S. Parents can add to the psychologist’s opinion that Leo has a sense of humour,
is decisive, sensitive, BUT also impatient, lazy, stubborn and a glutton.

Consultation with an audiologist. 

Unfortunately, the test result confirms the prognosis from
The Children’s Memorial Health Institute.

It looks like Leo has a serious bilateral hypoacusia.
The doctor says that these are definitely not exudates...
The conclusive examination is due next week, but it seems that apart from the ventilator,
Leo will depend on one other device – a hearing aid.


Our ventilator breaks down.

It pumps the air into Leo’s lungs, but doesn’t do the job in the other direction.

Fortunately, it happens when Leomom is standing by the boy. 

Otherwise, the air pumped in would make his lungs burst.

It turns out that the seal is broken.
Leoventilator is exchanged by an older model for a week.
It looks exactly like a vacuum cleaner from the 80s. 

It’s big, grey and ugly. 

Leoparents don’t know exactly how it works, and Leo doesn’t ventilate well with it.

Leo goes on his first walks in Warsaw parks and nearby forests.
He lies for hours in the shade of trees, learns the smell of grass, observes real bees,
listens to the birds singing and sounds of car engines.
He is also socially active.
And what’s most important: he’s going on his first ever trip to the seaside!
He will become a traveller one day, and how!

The test results from Paris came today. 

Parents are not CCHS carriers.

Leo’s was a spontaneous mutation.

Meaning: bad luck.

Or a real revenge of the goddess…


Leo has plucked out his tracheotomy tube twice during his sleep.
In a situation like this, we need to put a new tube within 10-20 minutes;
otherwise the hole in his throat will start to grow over.
And we might have a problem.
It requires sterility, precision, decisiveness and, what’s worse –
presence of mind.
We always have to know where the extra tube and the rest of the necessary accessories are. 

At three in the morning it is quite a challenge.

Relaxation music, candles, incense, aromatic oils…

Leo loves the evening ritual of shantala massage.

He laughs while his little feet, fingers, legs, arms, wrists,
and then fingers again, and the belly are slowly pressed and stroked. 

Unfortunately, each time Leomum gets near his head, he starts to cry.
He doesn’t let her touch him there, he tries to get away.
It’s the trauma after numerous punctures.
Obviously, hospital past isn’t be easily forgotten. 


Intensive care unit has moved from the hospital to our home.

We spend time getting accustomed to the new situation; on rehabilitation (4 times a week),
medical consultations (gastroenterologist, laryngologist, neurologist, immunologist, phoniatrist,
cardiologist, logopedist, audiologist…),
and struggles with the equipment that breaks down all the time.

Hospital was a nightmare, but being at home isn’t easier at all...

Nights are the worst.
Leo can disconnect from the ventilator even every 10 minutes.

Plus he’s labile, which means we need to change the equipment settings several times a night.

Also, as any other child, sometimes he wants to eat, sometimes he has gripes,
and other times his nappy needs to be changed…
It happens that we need to get up to attend to him around twenty times (or is it even more?).
During the day he can’t be let out of sight, too.
As every baby he takes naps a lot. 

And each nap can be fatal.