TNew Years Eve to the rhythm of African Drums!!!
Does Leo remember them from his prenatal journey to South Africa?

Leo meets new friends – Emilka and Laura.

Both girls suffer from CCHS.

Leo seems elated with their company,
up to the point that he literally eats out of palm of Emilka’s hand.

Leo wishes everyone a Merry Christmas!!! :-)


For his first birthday, Leo visits his grandparents.
There is a big party ;-)


It’s impossible, however, to escape the memories from last year. 

Images from the hospital, bits and pieces of dialogues, scenes,
harsh and merciless words – all of it comes back with amazing intensity.
The feeling of fear and disbelief.

It’s been a year.
Already and only a year.

By strange coincidence, on this day exactly, there is an opening of “DESIRES, LONGINGS...”
– an exhibition in Günter Grass Gallery in Gdañsk,
which includes a screening of “Curse”, the film about Leo’s birth.
http://www.ggm.gda.pl/pl,4,52,0,523,0,Grassomania_2011_Pragnienia_tesknoty,0,index.html"> href="http://www.ggm.gda.pl/pl,4,52,0,523,0,Grassomania_2011_Pragnienia_tesknoty,0,index.html">http://www.ggm.gda.pl/pl,4,52,0,523,0,Grassomania_2011_Pragnienia_tesknoty,0,index.html

Leo attacks Kielce – this time “Curse” is presented
at The Festival of Documentary Forms NURT.
In a programme section titled “Station death”…
Hmmm…

Apart from that, the film receives an honourable mention
at the Etiuda&Anima Festival in Cracow!!!!

Here is the FICC jury’s statement:
We chose this film, because it deals with basic human values.
It does not include any unnecessary scenes or sequences.
It is like a sad, yet beautiful cinematic poem without a hint of direct dialogue.
It leaves a feeling of gratitude for the miracle and beauty of the act of healthy birth.

Finally good news – reflux is healed.
At least temporarily. Leo will not be cut by the surgeons!!!

Celebratiton: a loooong walk ☺

Leo takes it very hard to have a sound inserted. 

After the procedure, he cries for an hour and doesn’t let anybody hug him…

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Now, he needs to be watched 24/7,
so that his little hands don’t remove the tube from his nose/stomach.

The date for another pH measurement test is inevitably coming.

Coming to the test is just another complicated logistics task.
What is required: two adults, one to drive, the other to operate the devices,
monitor breathing, change ventilator settings and suck the tracheo, etc. 

When in the car, Leo’s breath becomes shallow for no apparent reason,
and so he needs special attention.

Leodad works a lot, so Leogranddad comes to help.
From Tricity.

The procedures of pH testing are complicated.
We need to do the following: register at the reception desk; not lean on the counter;
explain ourselves (?!) because of a mistake on the referral paper,
and demand that Leo is attended to after all; not make faces;
check in a hotel, sleep in the hotel, pay for the hotel,
collect the papers, give the papers,
go from one floor to another (with all the stuff listed in earlier posts);
visit numerous wards; register again (mind the counter!);
undergo standard examinations;
and constantly wait for something…

It takes a whole day and night.

Finally, on an empty stomach, Leo turns up in the doctor’s office.
Hungry and scared, he waits for over an hour for the Doctor.
It turns out, however, that the test will not be done,
because the Doctor forgot to inform us that Leo should have stopped taking his medicine.
This means the whole sham will happen over again.
At another time.

Once again, we will have to organise transportation for Leo,
register at the reception, not lean on the counter,
explain ourselves (?!) because of the mistake on the referral paper,
demand that Leo is attended to after all; not make faces;
check in the hotel, sleep in the hotel, pay for the hotel,
collect the papers, give the papers,
go from one floor to another (with all the stuff listed in earlier posts);
visit numerous wards; register again (mind the counter!);
undergo standard examinations;
and constantly wait for something…

Pure Kafka.


M. C. Escher, House of stairs

Another hearing test with good result :-)


PS.Last time Leofamily forgot to take: 3 tracheo filtres, an extra ventilator filtre,
an extra band and ointment for inserting the tube
in case Mr Leo is kind enough to take his own out of his throat…

In autumn the summer has finally began. Leo enjoys the beautiful weather every day,
yet he cannot forgive his parents one thing (completely unnecessary in his opinion):
they make him wear overalls and a hat.

Going out for a walk is always a complex procedure.

First, there is a huge fight caused by the abovementioned pieces of clothing.
Then (when everybody is furious and sweaty),
a few things need to be dragged down from first floor:
ventilator with battery (11 kg),
suction pump for tracheotomy (x kg),

pulse oxymeter (x kg),
and Leo, completely stiff with offence (around 1000 kg).
Plus we cannot forget to take:
an extra tracheotomy tube, sterile gloves, saline,
disposable drain, drains for the suction machine, bandages for tracheo,

sterile gauze, and of course: nappies, tranquilizer,
a full feeding bottle, baby wipes, extra onesies, changing pad, rattles, blanket, gloves…
And the mobile.

And the wallet…
And keys!