We managed to accomplish a lot.
The most important is that we managed to meet together - 4 CCHS children with their families.
That is 1/4 of all the Polish CCHS team, so it's quite a success as for a first time!
We hope next time there will be even more of us!
The children had a great time together and the adults quickly shared ideas and personal experiences.
And all of this happened thanks to Elektronik cinema in Warsaw, which made a screening of the film "Our Curse" especially for us.
The whole income from the tickets went to Polish CCHS Foundation "Lift the curse".
You can still support our foundation by participating in our online auctions!
The summary of all we did during 1st International CCHS Day will be soon on our website: www.zdejmijklatwe.org
And now time for something more private:
The friendship of Leo and Emilia is in bloom!
The kids both love each other and, although they meet together only once in few months,
they don't need any time to tame each other.
Straight from the beginning, they disappear together somewhere beyond the horizon to make their own things,
and the parents have some time to talk in peace.
And only once in a while they check, if the children have not fallen asleep ;-)
P.S. Thanks to all the wonderful people that helped us in organising the CCHS Day.
Without you, we would have never managed to do it!!!
Karolina, Emilia, Kalina, Grzegorz, Aśka, Beata, Aśka, Jerzy, Marysia, Ewelina - THANK YOU !!!!!!!!!!!!!!!!!!
Tomorrow (November 14th) we will celebrate the First International CCHS Day.
The organiser in Poland is Polish CCHS Foundation - Lift the Curse.
Additionally, it will be celebrated by many other countries all over the world:
USA, France, Germany, Israel, Japon, Mexico, Brazil, Argentina, UK, Denmark, among others.
We all will raise funds to
FIND THE CURE FOR CCHS - THE ONDINE'S CURSE.
There is enormous amount of energy around and you can also join.
Firstly, by participating in the screening of our film "Our Curse" at Kino Elektronik in Warsaw (7:30 pm) - all the money raised from tickets will be transferred to Polish CCHS Foundation.
Secondly, by participating in various online auctions - all the information will be soon available on our website www.zdejmijklatwe.org and on facebook event Pomóż dzieciom z Polskiej Fundacji CCHS „Zdejmij Klątwę”
Thirdly, by buying things at mamaplus.pl online shop - all the revenue from November 14th will go directly to Polish CCHS Foundation.
We would like to thank all people that are supporting us!!!
And we encourage you to participating and sharing this information !!!
Leoparents postponed the struggle with the pacer until "later".
Leo has returned to his ventilator for a week. However, the "later" is approaching;
this week - the second try.
The ventilator time has been very creative. Both for Leoparents, and for Leo,
who, as the story goes, one day sat down at the empty sheet of paper and pondered.
"FOR MUMMY" - he said after a moment of reflection,
and then carefully he wrote down the dedication, and finally, he drew an island.
The most beautiful one in the world!!!!
With red soil (Africa?), palm trees, mountains, volcano, sun, castle and house.
Leofamily asks for an immediate transfer to such an island.
Now !!!! For at lest a month !!!!
P.S. And one more extremely important information!!!!
Polish CCHS Foundation Lift the Curse (Zdejmij Klątwę), together with other CCHS organisations from all over the world,
is preparing to celebrate the FIRST INTERNATIONAL CCHS DAY on November 14th.
We plan to do auctions, screening of our film "Our Curse", pyjama party and many others.
All the information will be available on our website www.zdejmijklatwe.org and on our Facebook Page.
after 6-hour-long fight with the pacer,
Leo was again connected to the ventilator.
Déjà vu, just like almost 5 years ago, when Leo first came home.
"It takes a while for the pacers to start working. So don't be alarmed at first."
- wrote recently one of the CCHS moms.
Leoparents are trying not to panic and not to loose hope.
During the night - they fight, during the day - they enjoy the weather.
Dr. Anders, after fulfilling his obligation scrupulously and heartily,
he went back north, staying in touch with Leoparents by SMS / email / phone .
According to the initial plan.
Leo, Leoparents and new equipment were left on the battlefield completely alone
(apart from the virtual contact Uppsala - Warsaw ).
Unfortunately, there is no support from Polish doctors.
Leo fell asleep connected to pacer, two pulse oximeters
and carbon dioxide measuring device, and they all alternately beeped till dawn.
Leoparents , according to the instruction given by the Swedish doctor,
were tuning the equipment by themselves and were searching for optimal settings.
Leo slept a second night connected to the pacer.
Leoparents didn't sleep at all during the second night.
However, they all believe that the situation will get stabilised,
such a change always takes time.
Fingers crossed still needed !!!!!
The pacer was turned on!!!
Leo fell asleep connected to a new device.
He slept the whole night with it.
No problems with accepting the change.
The parameters of ventilation were perfect.
Everything happened under the watchful and carrying eye
of the greatest doctor in the world, dr Anders Jonzon,
who watched over Leo the whole night,
adjusted the parameters
and drew up reports every 15 minutes.
He didn't close his eyes for the whole night!
Our gratitude knows no bounds
- for dr Anders and all others,
who helped us getting to this moment.
Today Leofamily stays alone with the new equipment.
Without a professional care.
Today is the first night.
Keep your fingers crossed...
The most beautiful and at the same time disturbing image in the world: Leo asleep. Without a ventilator.
Monstrous, huge, vast .
From the east it begins on the hallway,
on the west it ends up in the kitchen.
Every Saturday morning it is totally rased.
Every Saturday at noon it arises from ruins.
Leocity, and inside the whole Leoworld:
houses, streets, cars, kindergarten, park, theater, tracks, parking, railway stations,
gas stations, zoo, tower, restaurant, shop, market, pier, beach,
sea, airport, post office and hospital ...
One of the important events, which were not yet presented on Leoblog,
was a vacation meeting of Leo and Mateusz.
Mateusz is a 1.5-year-old boy, who also struggles with CCHS and also some other illnesses.
He has a tracheostomy, ventilator, broviak, stoma. He has also great parents and two wonderful sisters.
You can read about him on his blog: Oddychaj Mateuszku (unfortunately it is only in polish).
Leomum was really impressed by these great people,
and Leo was totally charmed by Mateusz's older sister Hania.
He was even showing off in front of her!
He did things he does not do normally!
For example, he jumped off the stairs!
And with each step, he was checking if SHE was looking at him...
And I guess he succeeded.
Because Ania was looking at him all the time.
And as a goodbye, she spontaneously offered him her little plush dog toy.
but his interest in them is usually very limited.
But the dog from Hania is something completely different.
At once, he got a name! Leo gave him a name "Lamp".
And then the other plush dog, the older one, who was called just "Little dog" before, felt jealous.
So he also got a name - "Locomotive".
And then it triggered an eruption of new names.
The ventilator got a name "Picture" and the giraffe - "Globe".
And it all became very complicated.
Because if the first dog is called Locomotive and the other one - Lamp,
so how do you call the locomotive and the lamp?
And what is the name of the globe? "Giraffe"?
There’s a hole in the neck.
There’s a pipe in the hole.
The pipe is attached to the neck with a band.
At the end of the pipe there’s a filter.
Tracheotomy also allows for easy and instant CPR.
It can be used for quick connection to the ventilator.
It has saved Leolife more than once.
But it also hinders speech. It stigmatizes. It disfigures. It limits.
It needs a lot of maintenance. It takes a lot of time.
And on top of that it has to be cleaned to remove the mucus which gathers inside.
Several times a day.
The cleaning is done with a pump connected to a disposable catheter.
The catheter is pushed into the pipe and down to the tracheal bifurcation.. Then you turn the pump on.
The pump works like a vacuum cleaner. It growls and sucks.
The sucking makes the person undergoing the procedure choke and retch.
It is unpleasant and unaesthetic.
Leoparents try to suck out Leo discreetly.
When they are among people they usually go aside not to force anyone to witness this unpleasant sight.
When they are among friends – they stay.
To make sure that Leo does not feel that it’s something bad or awkward.
The first time usually shocks people.
Adults look away and start talking.
Children stop talking and gape.
‘What is THIS????’ they ask.
‘This? It’s a snoteater. It comes from Bolivia. It’s closely related to anteaters. Look what a trunk it has! It feeds on snot. It loves eating snot!!!!!! [oink oink]
Leo feeds it and takes care of it. He gives it all the best bites.’
This story is 100% effective.
Fear is replaced by awe.
Leo is bursting with pride. Anyone would love to have a friend like that. From Bolivia!