Although the dressing has already been removed, scars (all four of them) are becoming brighter and flatter, and Leo has forgotten all about his stay in the hospital, Leoparents still can’t let go of anxiety. Because the electrode has not yet been launched. Because they don’t know what will happen when it has. Because no one can really guarantee that everything will work fine. Because the transition period between one way of ventilation and the other not easy. Because two metal discs under the skin feel weird. Because no one in Poland has experience with this equipment… Because how is it possible that Leo might not be connected to the ventilator…? Is it really safe?
Meanwhile Leo has come back to his daily routines. Kindergarten, rehabilitation, supplementary activities. He’s had an impressive entrée, because he has changed a lot during the summer. Above all: he started to talk. Although it happened over the holiday, there can be no doubt that he owes it to the year-round effort of the speech and language therapist, who was tediously squeezing out of him all these letters, words, sentences, tales. We should also mention a small side-effect of her actions. Because even better than speaking Leo likes reading. Leo reads. Fluently.
Below, you will find a film on which Leo reads a text which he sees for the first time.
As soon as Leoparents entered the hospital in Uppsala, their carefully constructed optimism crumbled. It became obvious that even the most modern and cleanest of hospitals, with the most beautifully painted walls is still a hospital. ‘How do you like it here?’ asked Leodad, hoping for some encouragement. ‘Not at all!’ Leomum had to disappoint him. That morning the idea to have their own child sliced open, at their own request, seemed utterly idiotic. What for?
They found the ward. They got a room. For Leo and Leomum. ‘Hi, my name’s This-and-That, I’m the nurse on duty here, at your disposal. The Doctor will see you in a minute. In the evening I will have to take a blood sample from Leo and apply a PVC. These are anesthetic adhesive bondages, please put them on one hour before the puncture. After meeting the doctor you can go for a walk, see the cathedral, castle, old town. Or maybe you’d like to have lunch? Would you like coffee, tea?’
The doctor came. Welcomed us. Did an interview. ‘Would you like to hear about the electrode again?’ Leoparents did. ‘Do you have any other questions?’ They did. Lots. The doctor answered all of them. ‘Anything else? If something pops up, I’m at your disposal’. Then the surgeon came. ‘Hi, my name’s This-and-That, I will be operating Leo tomorrow. The surgery consists in this-and-that, it usually lasts so-and-so-many hours. I have performed such surgeries that-and-that-many times. The surgery is to improve the life standard of your child. If it was dangerous we wouldn’t be doing it. Do you have any questions?’ They did… Then it was anesthetist’s turn. ‘Hi, my name’s This-and-That, tomorrow I will be responsible for anesthetics for Leo; for this purpose I will use this-and-that, in this-and-that dose. It will happen in this-and-that manner. Do you want Leo to take any pacifiers before the surgery?’ Leoparent didn’t know if it would be necessary ‘In such case I will prepare a dose and we will make the decision tomorrow depending on the situation. Any questions?’
Leoparents felt a relative peace of mind. All three of them went for a walk. Then a long night came. And then “tomorrow” arrived.
Leoparents prepared Leo to the surgery themselves. They sat him on the bed and together with a nurse took him to the block. Then Leomum took him into her arms and carried him to the willow-green room, put him on the bed. Someone put stickers in her hand. With fish. Leo fell asleep looking at a crazy-critter fish with yellow scales and purple mohawk. ‘Hi, my name’s This-and-That, I am here to show you the way out of the room. Please breathe deeply. Everything is going as planned. Go for a walk, when we finish the surgery and start the waking procedure, we will call you’.
This actually did not work as planned. Although Leoparents did go for a walk, they did not manage to wait for the call. They went back to wait at the room.
Finally, the door opened and out came Leo. Leoparents went with him to the ICU, where they met the whole personnel and where they could take care of their son, give him water, co-decide on whether he would feel better dressed or only covered, how many pain-killers he should get, whether light should be on or dimmed. They could read to him, they could play him a fairy-tale, they could do somersaults and stand on their hands - anything to make Leo feel comfortable. Both doctors came. To tell them about the course of the surgery.
At 9 p.m. Leo was back in his room.
‘Hi, our names are This-and-That, we will take care of you this night. Would you like to eat supper, you probably haven’t eaten? We will supply Leo with this-and-that medicine and connect him to this-and-that equipment. We are also at your disposal should you need anything. Would you like me to apply a pain-killer? We will visit you at night’.
They came and went many times, but they didn’t turn the lights on. In order not to wake Leo, they used little torches…
Next day Leofamily left the hospital. He’s home now :)
In the last half a year, Leofamily took yet another step towards normality. They acquired a seemingly trivial, but in fact very complex, skill. That skill is riding a long-distance train.
The train, of course, has to fulfill Leostandards, i.e. it has to offer the possibility to connect to power. This limits the choice of trains. And in case of those which are still an option, there remains the challenge of packing. And that is the main difficulty.
Starting off for a week journey Leofamily looks like a caravan of pack camels. They have three suitcases, two backpacks, two bags of medical equipment (ventilator, concentrator, pulse oximeter, vacuum, inhalator, disposable gadgets), and, obligatorily, a copy of Tuwim [a Polish poet of i.a. poems for kids]. Because during the rides it is CRUCIAL to read “Locomotive” (it’s a poem known to every kid in Poland; you can find an amateur translation here: http://allpoetry.com/The-Locomotive). It is as important as packing the ventilator.
When all is ready, it’s all great fun! There is no better feeling than to get on a train, ticket in your hand, track three, platform two the fifth car of an express long-distance train. Then take a seat number fifty-eight and just go… through hills, tunnels, fields and forest…
P.S. At the end of this summer Leofamily is setting off for one more trip. With a plane. North. To meet Ondine. Keep your fingers crossed!
This year’s summer hit is a game of crazy critters. The game of crazy critters has two versions: verbal and visual - you can talk about crazy critters: Leo: ‘Mum! Now me, crazy critters! Imagine a crazy critter which looks a bit like mum but speaks in dad’s voice; instead of a head it has a ball, and instead of on eye it has a coffee cup and instead of the other it has a cucumber, and instead of its belly it has a tree, and instead of the legs it has… cucumbers!’
Leoblog has been put aside. During the recent weeks it has totally overgrown. With moss, berries, wheat, forest…
In the meantime a (still) terminally and chronically ill patient subject to a program of home ventilation - a ventilator and tracheotomy child travels through meadows and forests on his bike, learns to swim, hunts wild animals, lights bon-fires, sleeps in a hammock under the stars, plays hare and hounds, spends time with his peers, a bit older friends and family. He is a four-year-old boy, happiest in the world, spending wonderful, sunny holiday, just like every kid deserves!
Unfortunately, a shadow has been cast on this carefree time. During a conference in Orlando Leomum had a chance to meet Lauren Savin - an amazing young women suffering from CCHS. Lauren was dealing amazingly with the disease. She was cheerful, optimistic. She had a good life, a family, two daughters.
For a second let’s go back to our voyage and another, already mentioned, explosion in Leodevelopment. The Tuscan sun pulled out from Leo what has been swelling in him for a long time. A stream of words poured out of him – Leo couldn’t stop talking. Or, strictly speaking, asking. He discovered the power of question mark and now he doesn’t allow his parents even a single thread of privacy; he asks questions about everything that has been nudging him for the last 4,5 year.
Where were you? What were you doing? What did you buy? What did you buy for me? What did you ride? Which tram? And to which stop? And with whom? What did you eat? Why? When? How much? Why? What does it mean? How? Where was it? And what does it rhyme with? (!)
And on top of that, several times a day Where am I?
Leoparents are basking in these questions. Nothing is secret, they have to confess everything. Everything, really, EVERYTHING…
You can follow them by buying a smartphone and tablet application YB Races (you have to add the track: Sailbook Cup 2015) !!! - all profit will be used for research on the CCHS cure!!!! http://sailbookcup.pl/pl/tracking/
We would like to thank ALL OF YOU, who have had their input in this project being a success! The company Homework for a magnificent visual identification (Aśka, Jerzy, Beata – your work has been an absolute hit!!!) The company Papertrix for print – fast and genius !!!! (Arek! Thanks!!!!) Orange Kino Letnie za projekcję i doskonałą atmosferę (Thank you, Adrian!) LaMillou for the presents, The company KHAKI for adorable scarfs (Paulina!!! They are great) The company NOMAR for tattoos (even Leograndma was walking around with a tattoo!) The city of Sopot for all the help and support, The organizers of Sailbook Cup regatta – for everything Sailors (hope you always have a foot of water under the clay!!!) Our Guests (love!) Foundation Team (Ania, Karolina <3<3<3, Mr Michał Koźnicki) and the determined, crazy (yes!!) and crowd-moving Monika Kwiatkowska, who was the mother of the whole project!!!!!!
Today we are launching the first project of the Polish CCHS Foundation: Lift the Curse - Baltic Sea Regatta for CCHS. The purpose of this event, entitled "Sale for Leo", is to support the research on the cure and development of awareness with regard to CCHS (Ondine’s Curse).