Unexpectedly, the perspective changed.
It’s settled. The decision has been made.
It turned out, Leo can be operated now! Right away!!!
Immediately!!!!
We don’t have to wait for anything!!!
He can be liberated from most of the tubes and cables.
Quality of his life can be improved! His safety increased!
The surgery is not at all invasive. It is more of a procedure after which the tracheo will be closed!!!!!!!!!!!!!!!!
Yes, closed tracheo!!!!!!
Leoparents had the preliminary talk with the doctor who will perform the implantation of diaphragm pacer http://averybiomedical.com.
Unfortunately, Leomodernisation costs around 100 thousand Euros (we are now waiting for a detailed pricing).
So we would like to ask you to make donation for Leo (here are all the details: www.leoblog.pl/en/donation/), and please spread the information around!!!!!!

Once a month, Leo’s tracheotomy tube has to be replaced.
It happens in three stages.
Stage one: taking out the old tube; stage two:
washing the wound and a moment of rest; three: putting the new tube in.
Stage three is the worst. It requires decisiveness, precision and sterility.
With a brisk move, we have to stick a piece of bended silicone half a centimetre thick into a little whole in the larynx. Then, take out the splinter.
During these few (dozens of) seconds Leo is choking, suffocating, gagging and his eyes are running.
Sometimes the resistance of his body against a foreign object is very strong.
It’s hard to overcome.
Stage two on the other hand is the most fun.
Leoparents are delighted to see Leo’s neck (normally covered by a band), and Leo covers the whole with his chin and cheerfully farts (yes!!!).
He’s laughing his heart out at the same time. Such a ten-minute moment of freedom.

Yesterday was different, however. After we took out the tube, Leo got sad.
He followed every move of Leoparents with great attention.
As if he noticed that the situation is serious…
As if he suddenly realised…
As if he realised that not everybody…
That it’s HIM who….

On Sunday Leofamily went to another children’s party.
The party was a blast, although it aroused extreme emotions.
A jealousy scene took place.
Tears, tussle, public accusations, a regular scene…
This nasty traitor, Leodad, took SOMEONE ELSE on his arms!

Plague in the Leofamily.
It’s all because of yesterday’s trip to the swimming-pool.
Leo did not fancy warming up and relaxing in the Jacuzzi.
We had to swim in freezing cold and deep water,
throw ourselves in the whirls of a rapid river,
and swim under the cascades of waterfalls.
No wonder Leoparents fell ill after these extremes.
They are snorting, blowing their noses,
coughing, and grumbling, plus their teeth hurt (!?).
Leo however feels great. Ventilation parameters are perfect. He’s like a volcano of energy. And he demands the same from his sick old folks. :-/
Magda Hueckel, Composition I (Water), 2010

Leo is a wonderful, cheerful, obedient, charming and an always smiling child.
Time spent with him is stress-free; it is pure pleasure and relax.
Each day is special, but today was simply fantastic!
As far the emotional development goes, Leo is a child taken out of tables.

– He uses the word no notoriously! – YES
– He reacts extremely to all bans (fury, uncontrolled flinging, screams, hitting, throwing and spitting food, spilling liquids, throwing the food from his plate on the floor, throwing cutlery around, refusal to eat) – YES!!!! YES!!!!!! YES!!!!!!!
– He draws and paints on forbidden surfaces – YES!
– He empties the garbage basket onto the floor – TAK!!!
– He demands all his wishes to be fulfilled immediately – YES!!!!!!!!
– His actions are contradictory:
he destroys his toys, and then he cries because they are destroyed – YES!!!!!!
– He demonstrates the desire to act on his own (Me myself!), he doesn’t let anyone help him – YES!!!!
– He incessantly fights with his parents on every possible field – YES!!!!

HELP!!!!!!!!

Whenever Leo feels like it, he bumbles.
In a pretty loud voice.
He says: a, o, u, y, ma, ba, ky, am, agu, agua, njieeee...
The problem is that he doesn’t feel like it very often.
Because there is no need to speak,
if you can show everything, like there is, there is not.
Most of all, however, he specialised in giving orders.
Give me!
More!!
No!!!
The end!!!!*
Thanks to mastering these few gestures,
Leo became absolutely effective in getting whatever he wants.
So he doesn’t wag his tongue too much. What for?

* The end is the same as bye-bye. When Leo doesn’t want to eat/play/ be around someone he shows bye-bye to his plate/toys/ person who should simply disappear. And that’s about it.
Bye-bye!

If the mountain won’t come to Muhammad,
then Muhammad must go to the mountain.

Dear Readers, Happy Muzungu and his friend Moses:

Leoparents cannot simply take his son on their arms
and set off for a trip into the unknown.
At least for now.
So they take him on visual, musical and culinary trips…
This post will be about food :)))
Leo’s palate is ready to go on any trip,
even to the furthest places in the world, and today!
He’s not afraid of ginger or chilli. Cumin, fennel flower, garlic or masala.
Leo devours gazpacho and dahl, olives and hummus, curry and grapefruits,
capers and anchovies!
He enjoys specialties of Ethiopian,
Thai, Indian, Mexican, Arab, Japanese, Chinese, Senegalese,
Italian and French (…) cuisine.
Soups, pastas and noodles, rise, fish, seafood, meats,
pizzas, casseroles, pancakes, tarts, pilafs, vegetables, fruit, cheese and nuts (…)
He doesn’t like baklava.
To sweet, insipid and blank!
This actually make Leoparents happy,
as they started to worry that Ondine has deprived Leo of taste buds :)))
P.S. He doesn’t love horseradish either :-)))

Sometimes Leoparents get tired.
It is when the questions come back.
With no answers.

Why HIM?
Coincidence? Or is fait?

God? Karma? Biology?
Curse?
The big trial?
Horrible punishment?
Stupid bad luck?
Error within the universe?

Star constellation? Configuration of numbers?
With or without any sense? Justly? Unjustly?

For something or for nothing?


And then we have to go back to the daily routine.
Get up. Smile. Do the inhalation. Suck the tracheo.
Give the medicines. Change. Make breakfast.
Build a tower. Play ball. Go to the post office.
Do the shopping. Live on.

- Will Leo be able to swim? – this was one of the first questions Leoparents
asked to the doctors, when they found out about tracheotomy.
– The fact that he won’t swim is the smallest problem… What’s important is that he ventilates well – answered the doctors, pushing Leoparents over the edge of despair.

*   *   *

Leofamily, for a change, spent this morning in the depths of sky-blue,
floating high above the bottom they were two years ago.
In short: Leo was thrown into deep waters.