Leo has just finished his periodical series of tests and examinations.
Ears – no pathological signs; eyes – the same!!!!!
(Our ophthalmologist is more than happy
– she says it is rare occasion that a three-year old permits her to check him so carefully;
additionally very few of them know alphabet and numbers! :)))
Leo has also went through IQ and psychological tests.

He swept through it like a thunderbolt answering all of the questions to a newly met gentleman,
correctly indicating images, linking puzzle elements etc.
Leomom, sitting aside, was just bursting with pride.
Suddenly, the new Mister produced another set of images
and took Leo by surprise with a new question which simply made the boy sink in his chair:
- Can you tell me. Leo, whether your mummy (sic! mummy) does ironing?

Leo froze.
A deadly silence reigned.
- Come on, Leo! Your clothes, Does your mom iron your clothes? – said this new Mister.
His eyes becoming large and round,
Leo stared at the Mister as if h was speaking a foreign language.
- The iron! Show me the iron!! – the Mister said in agitation.

Leo, abashed, peeped at Leomom, searching for help,
while she was nervously browsing through the files of her own memory
in the search for information when she had held such an object in her hand for the last time
and whether she really did it after her son was born...*
and, of course, whether Leo has ever seen an iron in his life...!

*Yes, indeed: Leoparents – they have never ironed Leoclothes, Leobedsheets, Leotowels :)

and sometimes you just go downhill tobogganing
and leave any crisis whatsoever far behind :-)

This year, contrary to the previous winter
(http://www.leoblog.pl/20-stycznia-2013/),
– we are doing it absolutely professionally!!!!!

Leosaturation began to drop at Tuesday night.
After we adjusted the parameters into plus,
the ventilator informed about too high volume of CO which,
speaking with brutal honesty means: Leolungs were being torn!
However, when we decreased the pressure, the oxygen saturation became too low...
And it was on and on like that – a vicious circle.
After several alarms, it was clear that something wrong happened.

A year and a half ago,
Leoparents called for an ambulance under identical circumstances
and Leo ended at the Intensive Care Unit for a week.

Leoparents decided to connect Leo to oxygen.
The situation improved but the night was very nervous.
The morning only confirmed our fears.
Leo had not appetite, his breathing was fatal.
He spent his whole day connected to the ventilator.
Our doctor came, but the only thing she could say was to keep on waiting.
So Leofamily waited, administering hectoliters of liquids to Leo,
inhaling him and giving him onions syrup.
A subsequent night was a subsequent massacre:
oxygen again and alarms at every 15 minutes.
Next day – half of the time on ventilator.
Plus onions, honey, etc.

Third night – we were able to discontinue oxygen supplies
and the morning saturation was satisfactory.
We needed to have Leo ventilated several times during the day
but the situation generally improved.
The crisis was over.
Were it not for the oxygen concentrator, Leo would go to hospital.
Luckily, this time we managed, paying only with our fear.
Nevertheless, Ondine will not allow us to forget about her.

PS. It was exactly 3 years ago when Leo had a hole made in his neck.

Dear Leoblog Readers we have a big, big request of you – please help Leo!

LEOSTORY
It was precisely 3 years ago (21.01.2011) when Leo was diagnosed with a rare,
incurable and potentially lethal genetic disease:
Congenital Central Hyperventilation Syndrome (CCHS),
colloquially called Ondine's Curse.
Leo – whenever he falls asleep – stops breathing.
Four days after the Leodiagnosis, he went through the operation of tracheotomy.
– He will have tracheostomy till the end of his life, his parents heard.

LEOdays
Whenever Leo falls asleep he must be connected to a ventilator.
The ventilator pumps air into his lungs which, however, destroys them.
The hole in his neck is a big hindrance to the development of his speech
and increases his susceptibility to infections.
The tracheostomy pipe needs cleaning several (sometimes more than a dozen) times a day.
To do so, you need a special device, operating like a vacuum-cleaner,
which must always be at hand near Leo.
You push a sterile catheter inside this pipe as far down as you feel resistance,
that is to the place where the trachea splits into bronchi.
It is unpleasant, and for those who see it for the first time – shocking.
It makes Leo nauseating.
Moreover, trachea must not become wet, which makes bathing,
swimming and even taking a shower complicated.
You cannot go outdoors with it when the frost is strong.
You should change the dressing around the trachesotomy everyday.
You need to change the pipe once a month.
The nights with tracheo and ventilator are real nightmares
– the alarms are wailing several times per night.

LEOFUTURE
There is a chance to have an electrode implanted into Leo's diaphragm:
http://www.averybiomedical.com
Thanks to this, it will be possible to close the Leotracheo
– the boy will regain the possibility of free, unlimited speech,
the risk of infections will drop, and, on top of that
– he will have a detail removed from his body,
which now signals that he is ill and stigmatizes him.
A large and heavy ventilator will be swapped onto a small radio emitter.
You change batteries in the emitter once in a few weeks; you charge the ventilator every few hours,
several times a day. The air, instead of being pumped will be sucked/ drawn
(in into Leolungs in a natural, physiological way)
thanks to the stimulating electrode – this means that Leolungs will finally have some rest!!!
Summing up: Leolife will become easier and Leoparents will finally be able to sleeeep!!!!!!!
Unfortunately, this operation is not performed in Poland.
Leoparents have contacted a clinic in Uppsala, Sweden.
A doctor from that clinic will do the operation.
The cost of the equipment,
the operation itself and transport is approximately 100 hundred euro!(data from April 2013).

HELP
Therefore we ask you to donate 1% of you tax to Leo:
KRS: 0000186434
Particular aim: Leo Hueckel-Œliwiñski 36/H
(please find details here: http://www.leoblog.pl/1-podatku/)
Leo is under the care of the "S³oneczko" Foundation,
where he has his own sub-account to which you can make donations.
The account number is: 89 8944 0003 0000 2088 2000 0010
(For transfers from abroad, please add:
IBAN: PL 89 8944 0003 0000 2088 2000 0010, SWIFT: GBW CPL PP)
and the annotation: "Darowizna na rzecz/ Donation for Leo Hueckel-Œliwiñskiego 36/H"
(please find details here: http://www.leoblog.pl/darowizny/)
Data of the Foundation:
Fundacja Pomocy Osobom Niepe³nosprawnym "Słoneczko",
Stawnica 33, 77-400 Z³otów www.fundacja-sloneczko.pl

OTHER LEONEEDS
We will spent the collected money on:
– the cost of the operation itself and related expenditure
– medical care (Leo must be regularly tested by a cardiologist, radiologist, audiologist, neurologist, ophthalmologist, logopedist, foniatrician, etc.);
– tests and examinations (holter, USG, hearing tests, etc.);
– rehabilitation (his muscle tension is lowered),
– logopediac training,
– therapy in the domain of sensory integration,
– purchase/ maintenance of equipment (e.g. capnometer, a device monitoring one's breathing),
– purchase of disposable sensors for the pulse meter, dressings for the tracheostoma,
medications, non-allergic adhesive plaster, etc.;
– nursing care – Leo can only live with the assistance of a qualified nurse
(additionally, it must be a nurse specializing in ICU care).

RESULTS
Three years of our hard work and care for Leo's development yielded excellent results.
Leo is exceptionally cheerful, wise and happy child despite initial prognoses made for him.
He is now beginning to speak, he can perfectly count, he is learning to read!
He has managed to overcome many a barrier but there is still a long way ahead of him.

WHY/ AND HOW ARE WE ASKING FOR HELP!
We also kindly ask you to spread information about Leo,
publicize it on Facebook/ Twitter, Goggle+ etc.,
add links to our blog, tell friends and... any other way whatsoever!!!

And the most important thing for today:
Best wishes to all Grandmothers on heir day!
Especially to Granny K, Granny E, and Granny R:)

Leo grasps his head in a theatrical gesture:
- Oh! My mistake !
And he bursts laughing. The magic of the mistake enchanted
him and now he mistakes everything.
He puts his socks onto his hands and grasps his head with a palm dressed like that.
- My mistake, he laughs like crazy.
In removing vessels from a dishwasher
(half a year ago he could unmistakably put each vessel to its proper place)
he does everything in waywardly. Spicing it with fancy.
A fork will end up in a flower pot, a plate – in a washing machine, a bowl – in a dust bin.
- Mistake! What a fatal mistake!!!, he roars with laughter.
He will squeeze his own shoe onto mom's leg, but the shoe is to small!!!
- AAAAA!!!! Mistake again!!!, he rolls with joy with one hand on his head.
When he does jigsaw-puzzle or builds from bricks,
he arranges them in such a way that they do not fit.
He gives nonsensical answers to questions. The more stupid the answer is, the better.
Even if he does not make a mistake, it is a mistake anyway;
after all, it was supposed to be a mistake.
And, again, it is so because in must be so terribly funny …

fot. Chema Madoz

PS. "Our Curse" was chosen as one of the best 4 films of the IDFA Festival.
The projections of "Best of IDFA OnTour"
have just been launched in the cinemas of Holland and Belgium.
We cordially invite everyone who will have an opportunity
– please go and see the film, there is more than 50 shows planned:)
You will find details here:
http://www.idfa.nl/nl/festival/the-best-of-idfa-on-tour.aspx

We also recommend an interview with Leodad.
This is a talk about the time of hardships in which the film was shot
(the first half a year after Leobirth),
about a process of acceptance, and the film itself:
http://www.pisf.pl/pl/kinematografia/news/rozmowa-z-tomaszem-sliwinskim
http://www.pisf.pl/pl/kinematografia/news/rozmowa-z-tomaszem-sliwinskim

It happens sometimes, that you need to do some business.
On the other end of the city; and you have no-one to leave your child with you.
You must take him with you.
You must walk, go by train, then by tube, then walk again.
Everybody is sneezing, coughing, the weather is cold and hostile.
Commuting itself takes almost one hour.
The fact that your child is ill does not exempt you from your commitments.
You need to work, earn you living, live....
and this situation happened only yesterday.
Leo and Leomom had to go somewhere to get something.
They traveled for almost one hour.
A tram, a tube, several yards of walking at snail's pace.
Finally they reached the place.
They entered the center of parcel collection and there – a crowd.
Leomom swept across the bored crowd with her eyes and assessed the situation:
1,5-2 hours of queuing.
In a closed, suffocating interior.
If anyone from the people here had an infection then – Leo will definitely go to ICU with flu.
The second conclusion was that in two hours Leo will be sleepy.
After two hours of waiting, a one-hour travel home will be dangerous.*
So, Leomom approached one of the men at the desk and asked
whether she could skip the queue because her child has tracho, etc.
- Of course, he replied agreeably.
But the people did not agree to this.
A guy emerged from the crowd.
First he jumped behind the door from where he grabbed a kid playing with his mom.
Next, with a crazy look in his eye, holding the child under his arm
(as a living proof of Leomom's impertinence) he attacked!
– Who, do you think, you are? Your child is the same as mine!
Do not expect you will be able to go in front of the queue!!!
– My son has tracheostomy. Does your child also have tracheostomy?
– It is the same child as mine! Same age! You have no title to skip the queue!
You're downright rude!
– This child has tracheostomy. It is very vulnerable and liable to infections.
Each infection is a serious hazard to his health.
– I – do – not ‑care !!!! – the man continued yelling, shaking his slightly confused child.
– The queue! There is one queue for everyone!
– I swear, you wouldn't like to be in my shoes!, Leomom growled,
feeling that the string of her patience becomes dangerously tense.
She could feel the gaze of several dozen people at herself.
The level of adrenaline was sky-rocketing, alarmingly fast.
One of the shop assistants finished the argument.
– Please, stop yelling, sir. You come into the front of the queue, too.

Mr. Fury eagerly admitted to the proposal,
suddenly seeing no impertinence in the fact that some people are given priority.

And the Lioness warns against stepping into her way.
Otherwise, she is not going to be so polite next time.
(Info for the impatient: view the film from 5th minute on:)

*when Leo is tired, he fails to control his respiration,
e.g. during long motoring/ traveling by tube/ tram/ bus....

He metamorphosed form "Mr. No" into "Mr. Yes".
It was enough that he mastered this new, magic word and everything changed.
Leo, Leoapproach, Leoworld.
Does he like everything – yes.
Is he keen on everything – yes.
Does he want everything – yes.
Does he agree to everything – yes.
Mister "Yes" gives a positive answer to 85% of questions.
He is surfing the wave of satisfaction, acceptance and openness.
You simply cannot help teasing him from time to time, asking a malicious-tricky question
(yes, Leoparents are pigs).
But Leo will forgive us anyway.
- Leo, you will forgive us, won't you?
- Yes.

PS. And the most beautiful thing in this whole metamorphose is the fact
that he switched his inner clock from 5:30 to 8:45.
Yes!!!

Traditionally (3 years do make a considerable tradition)
a meeting took place in the period near holidays:
Emilka, Laura and Leo
– three kids ill with Congenital Central Hypoventilation Syndrome = CCHS (their parents including).
Much has changed since the first time.
Children grew up, learnt to walk, began speaking.
They became more communicative, bold, bustling, self-confident.
They have developed their social skills, one could even say (slightly bending facts, only),
that they developed interest in playing together.
Parents, on the contrary – crestfallen.
Under the burden of duties, tiredness, struggles and disappointments.
Well, this is how Leoparents felt about it.
(Maybe, it was only their impression.
Maybe they looked at others through the prism of their own sores.
Maybe, it was only them who were crestfallen?)

Whatever the truth was,
a part of the meeting was devoted to a discussion on the system which was a disaster,
absurdities of management, deficits in health care system,
and what things could and should be like but were not.
Oh! It is wonderful to be able to complain in a company!
Especially that we all found time for a constructive exchange of thoughts anyway.
It would be nice to be able to meet more often
because these few hours leave much to be desired – needs still unsatisfied.

Dear Leoblog readers,
For Christmas we wish you all good health, peace and joy,
progress of medicine, love, friendships, fascinating trips,
new positive experiences and exciting adventures.
Like these, for instance: