Unexpectedly, Leo learned the numbers.
From zero to nine!!!
This made the distance between his
and his mom’s mathematical skills drastically smaller.
As a matter of fact, they go neck and neck…
Roman Opałka, 1965, Infinity, fragment

Winter is back.
It became chilly.
Everything is covered with snow.

We need to hide in a safe and warm igloo.


Even though technically Leo does not speak,
he manages to be very eloquent.
– Leo, let’s go brush your teeth.

Leo throws himself at the bathroom door and slams it hard.

– Leo, it’s late. Time to go to sleep!
The boy goes to the bedroom door with the speed of light. Bang!!!
The way is blocked. Now there is no way out,
we have to stay in the living room and continue playing.


Winter is difficult for Leofamily. This is why:
1. Freezing cold.
When Leo breathes in through tracheo,
the moisturising and heating filter (commonly known as a nose) is out of the circuit.
Freezing air goes straight to the lungs.
It is not exactly sure what temperature is too dangerous for us to go outside.
As always, there are differences of opinions (ranging from zero to minus fifteen).
Going too far can lead to pneumonia.
2. If it’s not freezing, then it’s just wet foul weather.
It rains, drizzles, slants down.
It’s dirty, ugly, unpleasant, preserved dog poo is everywhere around.
But these are not real problems.
The problem that is killing us is the amount of electronic equipment
(ventilator and pulse oxymeter) and humidity.
3. Heating season.
The air at home is very dry for a change.
It irritates the already irritated mucosa of Leo’s throat and larynx.
The mucus dries out, clogging the tracheo tube sometimes,
which may cause slight suffocation.
Humidifiers, inhalators and saline solution are in use,
but they don’t always work.
4. Epidemics.
Flus: swine flu, human flu, bird flu, stomach flu…
Tracheo makes it easier to get contaminated,
and for CCHS patients any infection is dangerous.
Lethal, even.
5. Monotony.
Leo spends most of his time at home.
It is against his (and his parents’) will, as they love changes,
being on the move, adventures and open spaces…
The world narrows down in the winter…
There is even less breath.
We managed to go out today.
It wasn’t very picturesque, but we managed,
that’s what counts!

Leo is exploring his body.

His little hand wanders through his face,
stopping from time to time with a question.

– This is your eye, Leo.
The hand goes further.

– This is the second eye.

– Nose.
– Ear.

– Another ear.

– Chin.

Suddenly, the hand changes its route.
It goes down south, into the unknown… Stop.
Attentive gaze goes at Leomom.
Another, completely new question goes hanging in the air.

– This is tracheo, Leo. Tracheotomy tube.

A moment of deep thought follows.

Little fingers now go to Leomom’s throat.

The hand outstretches in the gesture of “there’s none”.

– Yes, Leo. Mommy doesn’t have a tube.
The little focused face brightens with a triumphant smile.
The knowledge has been mastered, and the horizon has broadened.
The explorer can now return to the more familiar areas
of the already well figured-out questions and answers…

After three o’clock at night, Leo starts to wriggle;
he can’t seem to find a comfortable position or the right spot.
He wards off some invisible enemy with his arms,
weeps a little, grinds his teeth,
keeps sitting up and then lying down again…
And this is every night.
What’s going on in his little head?
What images disturb his sleep?
Maybe he’s dreaming that he can’t take the green ball from under the couch?
And maybe he’s trying in vain to fit the puzzles together?
Or that he’s sitting at the table and everybody is having cheese,
but he’s not getting any??
Maybe a hair trimmer is getting close to his head?
And maybe it’s not a trimmer but a nurse with a syringe in her hand?
Maybe he’s back at the ICU again?
All alone and without his parents. In a metal bed.
Maybe they are piercing him again, doing the tests,
putting a probe in his nose, taking smears, sticking a speculum in his throat…?
Or maybe the beautiful Ondine is looking at him from under the surface of a lake?
Francisco Goya, The Sleep of Reason Produces Monsters

The exhibition of Mr Leo’s photo portraits taken by Leomom is hung and officially open!
Leo spent the whole day yesterday helping with organisation – he was everywhere :-)

He has also made his TV debut :-))

After he arranged the exhibition and gave an interview, he went home, which was a big disappointment to all the guests who actually came mostly to meet HIM ;-)

Mr Leo came back from his Christmas vacation.
His stay at his Grandparents was more than fine,
Leo got rid of a cold, but he has gained a whole range of new experiences:
he met four dogs, kissed two girls, visited many friends,
took part in parties, ate, drank, and was adored by his two Grandmoms,
Great Grandma and Granddad all the time.

He also went to the seaside.
He observed waves hitting the sand for a long while,
saying goodbye to each one of them,
as it was retreating (“bye-bye”).

Today, as it is the end of the year,
we would like to thank everybody who has been helping us in all possible ways,
from emotional to professional, spiritual, social,
organisational, practical and financial support.
Thank you very much for the 1% of tax donations, all the contributions,
dedicated time, actions, emails, marathons, phone calls, information,
words, thoughts, gestures, home preserves, and other tokens of memory,
involvement and liking!!!!

And now it’s time for a little resume:

• We have had some successes this year:
  – Leo has learned to crawl and lift himself to standing position;
  – He has learned to walk, walk backwards, and walk the stairs;
  – He has become completely independent when it comes to eating and using cutlery,
  he has learned how drink from a cup and a normal bottle (even from a full half a litre one);
  – He accepted the orator (a special valve on tracheotomy tube that enables producing sounds),
  and in consequence, he has made some progress in verbal communication;
  – He has mastered non-verbal communication to perfection
  by creating his own gestures and faces that he combines into full sentences;
  – He has learned to recognize around 30-40 (???) animal species and a few letters;
  do what he’s told to (if he feels like it);
  draw very consciously (circles, zigzags, lines, dots, etc.),
  precisely construct buildings out of building blocks, distinguish colours,
  use the dishwasher, DVD player, stereo and medical equipment (…)
  – He has reset his inner alarm clock from 5.30 to 8.15 in the morning!
• We went on a few trips: to Tricity, Kashubia, Masuria,
  during which Leo experienced bathing in a lake, walks in forests and at the beach,
  evenings by bonfires, eating apples plucked directly from trees,
  he played in the snow, walked in the rain, he spent entire days in the woods…
• We have defeated his phobia of grass, of children, of the vacuum cleaner.
• We started going to the nursery (once a week).
• We were in the admission room three times; we can tick off two horrible stays at the ICU,
  dozens of doctors’ appointments, around 200 hours of physiotherapy,
  one fainting-fit, one case of rotavirus and one of pneumonia.
• Unfortunately, we have gained another piece of junk, an oxygen concentrator – sometimes it is indispensable…
• Other than that, excluding the periods of infections, breathing during days has improved noticeably.
• Oh! And we have almost founded, along with other families, POLISH CCHS ASSOCIATION!
• Visit Leogallery 2012 and have a wonderful 2013!!!!
  
  
  
  
  
  
  
  
  
  
  
  

Apocalyptic landscape according to Leo…