Leo needs to get his inhalations twice a day
in the morning and in the evening.
It looks pretty much like this:

Leo and Leodad decide to join Leomon on her photographic trip to Mazury.


For the first week, they help to find interesting locations,
and make the time a lot more pleasant with their company on long walks.
Sometimes it’s hard, as Leo’s equipment
plus Leomom’s photo equipment Loemamy weigh in total more than a ton,
and Leo is not the lightest any more.

What’s more, Leo unexpectedly turns out to be a horrible townie
– he hates getting in contact with grass!

Unless the grass brings his favourite toy to mind – tracheotomy catheter ;))

He spends intoxicating nights by a bonfire*!

Generally, he is having a great time.


Maybe it’s because the Masuria district sometimes remind him of his beloved Africa,
and his antenatal trip with his parents ;-))


* Those who are now considering taking parental responsibility away from Leoparents:
we would like to inform you that Leo did not consume any alcohol.

:-)

Leo is tired.
After having a full mug of milk, he starts to cry.

Leodad takes him in his arms, Leo cuddles,
stops crying and calms down.


Suddenly, Leodad notices that Leo’s irises sink into the eye,
Leo drifts off, he’s not in contact, he starts to get grey-blue.
He needs to be taken to the crib a.s.a.p.,
and connected to the ventilator;
now find the pulse oxymeter sensor,
fix it on his leg, connect.


In the meantime, Leosaturation drops to a dangerous level.

Finally, thanks to the ventilator,
it goes back to normal.

Leodad hates Leo’s illness.

He hates it how easy it is to lose him.
He hates that he’s deprived of the intimate moments with his baby,
when he trustingly puts his little head on his dad’s arm and falls asleep…

The International CCHS Conference has just finished.
It was held at a hotel located one minute away from Leohome :-)
Doctors, parents and people with CCHS from all over the world attended.
It was intense. Tens of hypotheses, opinions, questions,
cases, stories, doubts and pieces of advice.
Often contradictory.
There is still no clear path.
Some say that patients should be monitored at all times,
others persuade to try to live normally; some recommend masks,
others criticise them, and so on.


The comparison of Polish standards in attitude towards patients
and their families with world standards gives some miserable conclusions.
No less depressing is the list of possible complications in CCHS:


But there is also good news:
there will be a Polish CCHS Association.
We will fight for better life!

And Leoparents simply have to mention that Leo’s fame has reached United States.
Dr Debra Weese-Mayer from Chicago has called Leo the Polish CCHS ambassador,
and even included an Easter photo of him in her presentation. :)))


Ladies and Gentlemen!
Leoart:


Mr Leo wishes everybody a Happy Easter!


He spends the time in joy with Leograndmom, Leograndparents, Leoaunts , Leouncle, Leoparents and green Leobunnies :-)

The times of bad nights have come back yet again.

Leo sleeps soundly until one o’clock, then he starts to wriggle.
He disconnects from the ventilator even up to twenty,
thirty times a night, plus he gets tangled in pipes and cables, blocking the oxygen flow…

Alarms go off every five, ten minutes…

First night.
Second night.
Third night.
Fourth.
How long can one go on without sleep?

Helmut Newton, Jo Champa, Hotel Chelsea, New York 1988

A morning like any other.
Leo wakes up in a fantastic mood and starts playing already in his crib.
Suddenly, his saturation starts do decrease drastically, the alarm goes off.
Leoparents run to the crib…
Leo’s lips are blue, yet he smiles joyfully, completely unaware of the danger…
Odessanie wydzieliny ssakiem and Berodual inhalation solve the problem,
but Leoparents will not forget his purple smile any time soon.
It is so easy to lose him…


Leo has widened the range of his sleeping disorders by one, major disturbance :(
To Leoparents’ horror, he decided that 5.30 at night is already morning.
And punctually at this time, with one move he disconnects from the ventilator
and starts his day by turning on his musical box, and always with a big smile.
He does it without the slightest hint of consideration for Leoparents,
whose nights with him are not exactly a piece of cake either.

Marc Chagall, Aleko and Zemphira by Moonlight (1942)