Exactly 11 years and 3 days ago we were allowed to take
Ella-Marie, after 6 weeks of incubator stay, to our house in
Heist-op-den-Berg. The feeling then was indescribable! A car ride
of several kilometers turned out to be the most dangerous survival
trip ever. An obstacle on the road was the most irresponsible
traffic situation we had ever encountered. Even braking for a
traffic light seemed far too abrupt. Now you can still be so
rational, bringing a newborn baby home does something to a human
being! :-)
Yesterday, Monday, March 20, 2023, we were able to relive the
feeling in part, because we brought Ella-Marie from the hospital in
Utrecht to the hospital in Leuven.
Farewell in Utrecht
With mixed feelings we packed our suitcases. Mama Annelies had already completely arranged "her" stay in the buitenhuis. Another shout-out to the Ronald McDonald country house. A beautiful house, super sweet and friendly volunteers who are always ready for you and then also close to the hospital. It is a really clever concept, so that parents of a child with a medical background still get a feeling of warmth, support and help.
Meanwhile, dad Pieter and Ella-Marie had packed everything in the hospital room. Because omi and opi and oma and opa had already brought a lot with them on Saturday and Sunday, this was a short-lived work. Still, there was plenty of time to review everything. How we arrived in Utrecht on March 8, how much shock and sadness there was, what a great discharge it was when Ella-Marie opened her eyes and could say something. But also how sincerely grateful we were to everyone in Utrecht. Not least we think of Pieter Van Eijsden and Janine Ophorst, but also of all the incredibly friendly neuro-doctors and nurses. Dad Pieter's back was a little less pleased with the outdated room infrastructure, but that paled into nothingness with the increasingly obliging help of all the staff in the children's hospital.
We can already say that the choice for the surgery in Utrecht was the best for us. There was no other way, because Ella-Marie's body was gone. And the way in which the UMC has helped us testifies to enormous professional competence and high empathy.
At 9:30 a.m., the time had come. From the bed to the wheelchair and from the wheelchair to the heated passenger seat of the car.
Onwards to Leuven and a new life!
A first difference from now and 11 years ago? The car now works with automatic drive, so we could not stop by shifting incorrectly. The Waze App did not exist then either, but was now set up to drive towards Gasthuisberg Leuven. Because Ella-Marie was well wrapped in pillows and blankets, she was really comfortable. The first corners went smoothly and the feeling of fear of a wrong movement disappeared like snow in the sun. And you can take that almost literally, because we can hardly talk about the start of spring these days. The weatherman Frank, world-famous in Belgium, is retiring and the world is crying rain.
The Waze App has a function where you can share a car ride and let people follow where you are exactly at that moment. A small smile appeared on our face upon hearing the phrase: "A friend follows your ride through Waze". It also showed the home front to regularly check how things were going and they too could determine after 2 hours that all roads lead to a new Leuven and a new life.
The new Leuven
Where the UMC seemed like a city, Leuven is no longer inferior. Buildings are springing up like mushrooms here, a concrete stop will not be for immediate use.
The static new hospital building has a children's ward with really beautiful rooms. Large windows, space for a bed, a closet with mattress (you read that right, dad Pieter's back still doesn't improve) and a desk to work on. In addition, access to a beautiful and clean bathroom and you can already say that we have gone from a three star to a five-star hotel. Even the food here is different. It is also possible that the operation is further behind Ella-Marie, but it is striking to see how much more she eats here than in Utrecht.
The New Life
The most important news remains Ella-Marie's current freedom of attack. Where the shock was still there for a while because she suffered a lot from headaches, we can now say that we are sure that she does not have seizures. A little secret? We can't really get used to a night without attacks. Fortunately, Ella-Marie still wakes us up regularly because a "natural break" is needed or because she doesn't get turned in bed. Imagine if we could really sleep through a night... :-). And yet that's the plan for soon!
We have only been here for 2 days, but we can already speak of a very enthusiastic team of people who really want to help Ella-Marie move forward. Physiotherapist, occupational therapy and even a school teacher were already in our room. They have each worked with Ella-Marie and to our surprise we are already seeing progress. Ella-Marie can:
- keep both eyes open now, as the swelling at the head is almost gone
- Moving her left arm up by a few millimeters
- her left leg shifts a little bit
We also specifically thank teacher Ann of the IMG. By being enthusiastic herself, she already provided some work material at the request of the hospital teacher, so that we can also train the cognitive again.
So it's all the start of a new life. One where there will still be a lot of work, but one that literally and figuratively helps us take a step forward.
We were asked by some friends if the blog could be forwarded to (parents of) children who also have epilepsy. Of course this is possible and allowed! We don't do this for media attention, but if it can help people, we're happy to do so!