It's not how many tmes you get knocked down that matters, it's how many times you get back up!
Welcome 2023!
Here we are. 2023 should have been the year where we started a
new life and, as you know, with some delay, it will be.
We mentioned it in our previous blogs: we are combative and fully
engaged in making all possible preparations. Below is a small
overview of the next steps.
Important information: The surgery will take place on March 10 in Utrecht!
Project Hospitals
This year we have already visited Gasthuisberg Leuven. This was necessary for several reasons: eye examination, dermatologist and rehabilitation preparation. A specialist looked at the current scar tissue on Ella-Marie's head. After the first surgery in 2018, the scalp never healed nicely. To this day, small inflammations can sometimes be found at that site. In itself, a scar that does not heal nicely may sound like something "inconvenient," but when you combine it with scalp and epilepsy, there may also be the extremely rare disease "Coup de Sabre." First silver lining of the year: we received confirmation that it is not the disease, but rather poorly healed skin. The consequence? Not much, in the case of Coup de Sabre they should have been extra careful during the surgery.
Visual field limitation
Over to the eye exam then. If they are going to disconnect the entire right hemisphere, Ella-Marie's visual field will be severely impaired. Our initial information was that the left side of her left eye would lose vision, but that was misunderstood by us. Actually, it is true that you can split the eyes into 2 parts. So because of the surgery, half of the 2 eyes (each time the left side of each eye) will not see well. From then on it is best to approach Ella-Marie from only one side (right). If we do that from the other side, she will probably be surprised that someone is "suddenly" standing in front of her. She will also have to use many tricks to make sure she can read a whole page and not just half of the page. Or half of a word.
Rehabilitation track
Here she is again! Prof. Katrien Jansen has given us another positive push this year. Together with her we have already gone through a rehabilitation process. We hardly dare to express our "hope" anymore, but we do it anyway.
If all goes well, Ella-Marie will undergo surgery on March 10.
Following that, a few days of intensive care are planned. Then a
few more days in the hospital in Utrecht after which she will be
taken to Gasthuisberg Leuven. First she will be followed up
postoperatively and there intensive rehabilitation will start,
where we will focus on gross motor skills. Learning to sit, stand,
walk, ... . The goal here is to be able to walk again within 2
years and/or/if it will be clear how far Ella-Marie gets in her
rehabilitation. Big walks will be difficult anyway, but that is
already the case (we thank the teachers at IMG for always taking
this into account!).
The fine motor skills on the left hand should be completely
forgotten. Her arm will not become super mobile either, but gross
movements should succeed later, so that she can clench a ball in a
controlled way with her left fist and fully functioning right arm
and hand.
Project House
Viewing houses
The housing market is becoming fairly stable, but of course the
costs are and will remain enormous. We have viewed several houses,
but unfortunately none of them are completely to our liking. Either
there is no room or bathroom downstairs or everything is
downstairs, but the house actually needs to be completely rebuilt
(read: mold, moisture, stability not to our liking, ... ).
It is almost impossible to find a house that meets the criteria.
Let alone to buy it if we did find one.
Architect with good news
Just before the end of last year, we got some good news. Apparently there is a possibility to expand after all, if our neighbors agree. Talks with the architect are ongoing and we will soon get a first proposal. We are talking about a mega reconstruction, because the entire first floor will be removed and we will build a bedroom, bathroom, new living room, new kitchen, .... . It is already incredibly heartwarming to see how many friends are already ready to help us. We have already had conversations with people who want to come and break, build, cook, wash, .... . You are all the top! Merci!!!
Ella-Marie
Of course another update on our sweet girl.
The seizures were getting a little too severe. We were talking about 7 to 8 seizures at night and some during the day. After talking with prof. Jansen, we increased a certain medication. As a result, she now only does one to two seizures per night. Both she and we find that "acceptable" until March.
Ella-Marie has a huge fright about the wheelchair. Together with the psychologist we will work toward this. One evening she spoke to us in bed about this. With a small tear, she said she "didn't like" it. Since there is no other way, we said that we understand her and try to look forward positively. And guess what? Her goal is to be able to imitate a fun TikTok Dance as soon as possible! Let's all hope for that!
Until another update!