Taking advantage of the fact that they have been invited to Italy
Leofamily decided to try
and do what they have been dreaming of
in their hearts for a long time.
In other words: a long journey in the full composition.
And so, after the conference in Rome,
with twenty kilograms of medical equipment,
the three of them set off to Tuscany.
Well, four actually, don’t forget the Doggy!
Anxiousness and fear were soon replaced by euphoria.
It was simply awesome!!!!!!!!!!
Leo was going crazy with joy.
His enthusiasm, endurance and curiosity
exceeded even the boldest expectations of Leoparents.
He was keeping up with them even in 42-degree heat,
even until 11 at night, at the same time performing model saturating.
And again, in response to all the new stimuli,
tastes, scents, images, sounds,
pure pleasure drawn from discovering the world
and a break from everyday challenges,
he experienced a true developmental explosion.
Leofamily was invited to a CCHS conference in Rome!
The first part of the meeting included screening of the film "Our Curse",
followed by a presentation by Leoparents about the recently established Polish Foundation CCHS: Lift the Curse.
The second part of the meeting focused on the research for CCHS cure.
Leo lasted bravely through most of the meeting.
It was also the first time that he saw the film – from beginning to end.
He commented on the scene showing the exchange of the pipe, saying that he was small and scared then.
But not anymore! Now he’s a big boy!
And after the conference he visited the city.
He turned out to be the best travel companion possible.
He walked around in heat for hours,
just to finish it off by sitting until late on the bank of Tiber.
And he was very pleased with it all!
P.S. We would like to thank the Polish Institute in Rome and the Italian CCHS Association for their invitation!
We’ve been silent, because we’ve been totally absorbed by the Polish CCHS Foundation.
The website is on its way (www.zdejmijklatwe.org) ;
meanwhile you are most welcome to like our fan page
Polish Foundation CCHS: Lift the Curse on facebook!
Our beautiful visual identification was prepared by the firm: HOMEWORK!!!
Joanna, Jerzy – thank you!!!!! <3
Leo is handling chickenpox well.
The rash could be worse.
The itching is bearable.
In fact he is rather content.
That he can stay home.
Just be, as simple as that.
Draw, read, stare out of the window,
turn from side to side, build something, destroy something…
At last he doesn’t have to rush anywhere.
For that persistent „having-to” is his biggest scourge.
There’s always something to examine.
Something to repair.
Something to monitor, integrate, correct…
There’s always something to catch up with.
Speech, walking, jumping, spitting, peeing…
Monday: psychomotor education, speech therapist, kindergarten;
Tuesday: early childhood development, kindergarten, kindergarten rehabilitation;
Wednesday: psychomotor education, rehabilitation;
Thursday: kindergarten sensory integration, kindergarten, speech therapist;
Friday: kindergarten, kindergarten speech therapist, early childhood development.
All these activities are needed.
All recommended by specialists.
All great, with noticeable results,
decreasing the distance between Leo and Leopeers.
And on top of it all are the exercise he has to do at home (speech and integration).
And what about time for being lazy?
What about idleness?
What about being a child?
All of this has been tormenting Leoparents for a long time…
Leo's trip to the desert ended with an emergency landing.
For unknown reasons, Leo's breathing became inefficient,
so Leomom and Leoaunt put him in the car and took him home early.
The doctor came, examined him, listened to his breathing, looked at this throat, in his ear.
He didn't find anything out of the ordinary,
and after a day at home Leo rebounded.
His blood-oxygen levels, temperature and mood all returned to normal.
So Leoparents put him in the car again and went on another trip to the countryside.
Unfortunately, there were more problems. Leo became sluggish, moody, unhappy.
He didn't want to do anything.
He only wanted to sit in the car, ideally on the way home.
Worried and surprised, Leoparents did as he asked
and cut short another attempt at rest and relaxation.
And then, at home, everything became clear.
The reason for Leo's indisposition blossomed all over his body--
he was covered in dozens of itchy bumps.
Now we only had to pass the time at home.
And to make sure that Leo didn't scratch himself too much...
- What's that letter? - Leo asks pointing at an odd symbol on a package of miso soup.
- I don't know, that's in Japanese . It probably says "Miso Soup" - replies Leomom
- But what's that letter? - Leo doesn't relent.
- I don't know, sweetie, I don't speak Japanese - Leomom admits.
Leo bursts out laughing.
- I know! - he answers and disappears into his bedroom,
only to return momentarily with his beloved world atlas. He opens it to Japan.
- It says "Japan" - and points to the Japanese label "Japan"
and then takes a piece of paper and starts to copy the letters.
Admittedly, he puts the letters out of order,
but to Leomom, all the separates him from perfect caligraphy are only a few weeks of practice.
And we have to face the truth: he knows Japanese better than his parents…
Dear Leoblog readers!
We have great news!
First piece of news:
We're ready for the operation!!
When: End of the summer.
We thank you all for everything!
For your support, advice, intermediation,
participation in fundraising for Leo, and for your kind words!!!
Second piece of news:
Together with Ania, Emi's mom, we are establishing the Polish CCHS Foundation: Lift the Curse.
It's time for us to steer this positive energy towards all children and adults living with CCHS.
We will be active in Poland and internationally,
working closely with the American CCHS Foundation.
Our goals are to find a cure and to lift the curse,
and, until that can happen, to raise awareness, standards of care and improve meaningful integration into society.
We already have a great team working with us,
and we invite anyone who wants to help to join us.
A restaurant. Leo parents study the menu.
Leo looks at the menu with interest over his mom's shoulder.
After a few seconds he declares triumphantly:
- It's in Europe!
- What?? What's in Europe, son? - Asks a surprised Leomom.
(because in Polish, Dania, also means Denmark!)
Leo had a visit from Thijs - a five year-old from Amsterdam,
Everyone wondered how the boys would communicate,
and if they even would.
Thijs speaks and understands Dutch,
Leo speaks (almost) and understands (almost too well) Polish.
To everyone's delight, the boys found common ground.
They measured each other's blood oxygen levels
and celebrated when one of them had 100%
Because they both know that 100% is the best result.