Welcome back, dear reader! No weekly update this time, but with a week's delay we are back. This is mainly because the writer on duty is spending a lot of time abroad. Not to explain the wonderful world of epilepsy surgery, but rather to forge positive ties on a professional level. Nonetheless, we can once again report a lot of positive things to you.
How time flies!
We are now more than two months down the road. The operation
already seems like an eternity behind us and the doctors at the UMC
thought so too. High time to give an update to our Northern
friends!
During the afternoon we had a virtual conversation with Janine
Ophorst and Prof. Pieter Van Eijsden. They too loved seeing how
Ella-Marie is evolving. To put it in computer terms, the firewall
is gone. To express it in normal human terms: say something to
Ella-Marie and you get a response within a millisecond, where
before (due to the epilepsy) you needed a second more processing
time (and thus patience). Ella-Marie was rather shy, but was still
able to show what she could already do with her arm. Dr. Moens from
Pulderbos had also joined us and could only confirm what we also
felt: Ella-Marie is showing strong progress.
Not everything is positive
To be honest, not everything is positive. Constantly lying in
bed and sitting in the wheelchair cause Ella-Marie to start
suffering from muscles that are too short. A very well-known
medical solution is a "splint." With some surprise we looked at
Ella-Marie when she proudly showed us what a beautiful pink booth
she had received. We especially noticed that she has more security
when she has the splint around her foot. She dares to walk more and
further, which in itself is a nice win-win situation.
Another sticking point is and remains the cooperation between the
health insurance company and the UMC. Again, we had to go through a
lot of paperwork to even have a chance of getting reimbursed.
Still, we don't want to complain too much, because we realize all
too well that medical care in Belgium is very different from
medical care in America.
Unfortunately, we also received less good news from family and
friends. It has nothing to do with Ella-Marie's situation, but it
shows once again that the world does not stand still and that
everyone can face setbacks. We hope that they too can find the
support they need!!!
What top friends!
We have always found support and comfort from our friends and
family.
About Danny and Marieke we have already mentioned some positive
terms of strength several times. Yet we want to underline this once
again, because even with pneumonia, friend Danny is unstoppable!
Thanks to him, we were able to set some weekend appointments again,
to pick out our kitchen and bathroom.
For budgetary reasons, we envisioned an unnamed Scandinavian yellow
and blue furniture store (#NoSponsor) to furnish our new kitchen.
Danny tapped into his contacts and thanks to him, we were able to
discuss our wishes for a kitchen in faraway Hasselt on Saturday.
Whether it will work on budget we don't know, but in any case it
was already a very nice conversation!
What a top party!
The sweetest "brus" in the whole world, not entirely coincidentally our daughter Olivia, made her First Communion. It was a day not soon to be forgotten! The water table is back on point due to a rainy month of April and May, but the water was not replenished on May 14, 2023! It was a beautifully sunny day and at our garden party almost everyone in the family was present. It was also the time to bestride Olivia and I am happy to let you in on the speech!
Dear Olivia,
Today is the day. Finally a day where you, our top girl, are in the spotlight. We did everything we could to make it a beautiful party. And for once, that's really something you deserve.
Because, little Olliebollie, how proud we are of you! Ever since you were born, we have actually been amazed at what you can do. From day 1 those beautiful blue eyes look at everything the world has to offer and they take everything in. And what goes on in that little head of yours, we cannot even fully understand.
You are REALLY a smart girl. I often stand and look at you in amazement. Read a text once and you know it by heart. If I don't throw you completely upside down on the trampoline, you can name every grinding table within half a second. And every news item you see on the NOS news or Karrewiet, you can explain perfectly.
So is there anything you can't do well? Yep... You really can't take your losses well! :-) But... You are a Denies, so we never lose! :-)
The same goes for gymnastics. Mama and I sometimes wonder if we gave you bones at birth. You are super limber, you are super strong and you can really do gymnastics very well. Spinning on the bridge, jumping on the beam, flying over the pegas or a beautiful exercise on the mat ... you can do it all.
The stories we hear at school also make us really proud. Who does the class want on the student council? Olivia, of course! Who should dance in the front row at the school dance? Olivia of course? And who is the only person who dares to stand up to a group of bullies? Olivia of course!
Dear Olivia, today is your day and you really deserve it. You take super good care of your sister, are a super sweet daughter and we are really proud of you.
Thanks to you, our day is one with sunshine every day. Have fun at your party!
And all the lovely people at the party had done their best to give Olivia the perfect gift. Besides a gymnastics bar, lots of candy and flowers, there was also a gift certificate for... 2 days of Efteling!!! You can guess that someone secretly jumped out of her wheelchair for joy too! :-)
What a top aunt!
First things first! For those who had their TV, radio or news app on a Flemish channel on May 16, they did get to hear some or somewhat dramatic news about the decline in the reading level of our young people. It was Aunt Katrijn who, as chief investigator, was allowed to take the floor on all the TV channels and proceeded to explain just what was going right and wrong. A very proud and attentive Ella-Marie followed on her tablet and cell phone what was being said and recorded it very alertly. The consequence even became clear in the Efteling! You can read more about this in the blog.
Efteling, where dreams really do come true!
Daddy Pieter was home Wednesday night just in time to help pack the suitcases. Because Thursday and Friday, vacations in picturesque Belgium, were THE days for a visit to our favorite park.
One point of negativity: we noticed in many things that the Efteling also felt the crisis. Less quantity at the breakfast buffet and several attractions with some technical problems. But because the four of us were so wonderful together, we quickly looked at the positive things.
Like there especially are: the first steps on a set of stairs! Yes, that's right! Anyone who has ever been to the Efteling knows the Land of Laaf. And in the middle of the land, stands the school of the Laafs: the Leerhuys. To take a break after a very busy time, we had found a beautiful bench in the sun. A view of a small pond and behind it the Leerhuys. Was it the sun that energized or a photo with Pardoes? We don't know, but out of nowhere Ella-Marie said she wanted to take a look at the school. And in the photo, do you see the steps at the bottom of the house? Then imagine the following scene.
"Dad, can you put me in the middle for the steps and put the brakes on the wheelchair?". Of course I want to do that, but somewhere in my subconscious my lower back was already starting to complain. Securing the brakes and ready to lift Ella-Marie, I look at her. "Just sit on the other staircase Dad." And there it happened. Ella-Marie straightened up and grabbed onto the banister. And after a tremendous effort by Ella-Marie, I saw the left leg go up. After several attempts, the foot came down softly on the first step.
What to an outsider must have taken half a minute, to me was a nice long dream come true. With a giant glow of pride surrounding her, Ella-Marie stepped up to the window and looked inside the Leather House. She then turned and stepped back to the wheelchair.
Back to the aunt
Who else but neighbor Simonne provided an extra penny to buy a gift at the Efteling? Olivia, as always, went through the store in a very focused manner. The T-shirt she bought was already wearing two days later at cousin Hannah's birthday party. Ella-Marie had seen a beautiful bubble blazer and rolled in that direction. But without the slightest influence from Mama Annelies or Papa Pieter, she smoothly turned to another department and raced straight for the books.
"Daddy, a bubble blower is nice, but in Pulderbos I sometimes sit alone and then I would like to read a book." Aunt Katrijn can be sincerely proud, because at least one child is already starting to read more books! :-) We drove out of the Efteling shop with two books about Baron 1898 and the Knights of Raveleijn.
Wheelchair at the Efteling
Speaking of those knights: wonderful show at the Efteling. Definitely worth a visit! If you are in a wheelchair, the employees of the Efteling advise you to climb the 30 stairs so that you can watch the show from above. Where the lower back was still happy in the Land of Laaf, it now found it just a little less fun. But again: REALLY worth doing.
In general, we find that the Efteling makes it a priority to make things as easy as possible for wheelchair users. Almost every attraction has a separate entrance, allowing you to ride your wheelchair right up to it without probmen. In many cases, the queue goes faster, too. Whether you effectively have to have brain surgery for it is perhaps too much of a stretch. :-) But we were happy to see that the facilities card did its thing.
And what else?
Wow, you read all the way to the end. Fine! Hopefully it wasn't too long and you learned a little more about Ella-Marie's world again.
In the coming weeks, we are going to continue to work firmly on mobility and cognitive ability. And in addition, we are also going to put our focus on building out the house!
See you in writing! :-)