We are 2 weeks further on in our rollercoaster journey. Last week we could not give an update because it was so amazingly busy, but this week you get an extra long update from us! :-) Brace yourself for an information bomb!
No attacks
The most important thing we can report: Ella-Marie has been on only one type of antiepileptic medication since Wednesday, April 26, and yet she remains seizure-free! We notice in many things that she is calmer in her head. For example, she is already sleeping much better, is clear when talking and is very often really happy and laughing. Of course, the goal remains to go through life without medication, so we are quietly working on phasing it out. Patience will be a beautiful thing here, but the monotherapy and seizure freedom right now are a success!
Physical progress (with ups-and-downs)
Thanks in part to seizure freedom, Ella-Marie can work on her mobility to the fullest. The ups and downs are regular. For example, we notice occasional frustration. Her left arm does not want to cooperate well and she sometimes hurts herself because her fist cramps and she cannot relax. She was also very afraid of being in a wheelchair, but this is better than expected.
Because... she already dares to straighten herself up in that chair from time to time and then take a few mini-steps! Talk about a big UP! Of course, everything is still very laborious. We also notice that the muscle length is shortening, causing a pointed foot.
But how happy we are when we see that proud face. The moment when she straightens up, looks at us with great confidence and then takes a step are really beautiful moments!
The hours of physical therapy and ergo are clearly paying off. She will still have to work hard every day, because it is still a long way from where we hope to be. But the small steps she is taking are really encouraging!
Mental progress (with ups-and-downs)
Ella-Marie has been sleeping alone in Pulderbos for two weeks.
As you can imagine, there was a huge "down" at first. Not only with
Ella-Marie by the way, but everyone in the family had a hard time
leaving her behind in Pulderbos.
Fortunately, the counselors are real top people. With great
patience, they helped Ella-Marie through the nights. In the
beginning, the "alarm bell" went off quite a lot because more than
enough excuses can be found. "The sheet is not on the good spot,
the lights are out, my leg is out of bed, ... ". But in the last
few days, she has really started to sleep heavily!
We said it: normal sleep and no constant epileptic activity do
wonders. At 7 in the morning, we get a WhatsApp video call from
Ella-Marie. We then get to see a sweet, bright, happy little snout.
And during the day, she learns a lot at school! Thanks to teacher
Ann from the IMG, Ella-Marie has the opportunity to follow the same
curriculum. And at the moment, these subjects are going smoothly.
Recently, she even mentioned that she is starting to like math!
If this is the predicted behavioral adjustment after brain surgery,
I think many parents will make an appointment for their child to
like math! :-)
Super sister Olivia
We already talked about a busy week. One of the busy times was
for super sister Olivia! For several months now she has been
jumping from one household to another. She hasn't had a permanent
bed for a while now. From Utrecht, Leefdaal, Pulderbos to
Heist-op-den-Berg. Sleeping with Grandma and Grandpa, Omi and Opi,
neighbor Simonne or with friends ... she does it all.
Sometimes we notice that it is a bit heavy. For example, she
recently asked to "be home with the four of us normally" for once
like her friends. We think this is completely understandable and we
try to make her feel good as much as possible.
At school, she remains her strong self. During the rides to Holland
or Pulderbos, Papa Pieter tried to get her to say the grind tables
as quickly as possible. It got a little embarrassing when Olivia
effectively knew better. But the biggest accomplishment this time
was achieved at the gymnastics competition. Despite the busy days,
despite the mentally tough course, she still managed to take a
beautiful second place! We are really very proud of her and oh so
happy with our sweet, hefty, tough, smart girl!
The House
Good news here as well. It looks like we can start building within a few weeks. However, because of all the hustle and bustle, we haven't been able to look at, decide or determine much yet. Fortunately, we have good friend Danny, who is writing to a lot of people.
Thanks to him, there are extra people working to figure out how
we can be as efficient as possible (both cost and time). Without
Danny we'd probably be at a loss, but now there's a good
feeling!
Friend Maarten is coming by soon for the electrical work to be
finalized and with architect Cy Van Steen we are going to work on
the final touches.
The next few weeks are going to be crucial here. We are cleaning up a lot ourselves. We even did a garage sale, because at 11 we had accumulated MANY things. The more space we can make now, the easier the expansion will be. So if you still need kids stuff (puzzles, toys, ... ), you can always give us a call! :-)