Pride

Have you seen the photo of Ella-Marie? For a thousand and one reasons, we are proud of this!

Happy face

Ella-Marie, despite phasing out medication to one type of antiepileptic drug, no longer has seizures. For some time now, we can talk about a pain-free life for Ella-Marie. This, of course, also makes her smile more
And now admit it... WHAT A BEAUTIFUL CHILD! :-) Fortunately, she has the handsome genes of mommy for that! Unfortunately, daddy Pieter will have plenty of work to do later on to keep the boys away. If this blog still exists by the time the time comes, I will create a sub blog to forge plans with you on how to keep the boys away! :-)

Nice yellow hugging pillow

In an unexpected moment, a nice family showed up at our door. They have been following Ella-Marie's story for quite some time and wanted to come and cheer her on. She liked the gift (the yellow smiley face pillow in the background) so much that it had to go with her to Pulderbos right away. You can tell by everything that Ella-Marie is really happy with your messages and gifts. Every message we get via email or phone, we read aloud. And then you see those bright blue eyes get just a little bigger and a proud smile appears on her face. We see that smile every day, because mom Annelies or dad Pieter go there in the evening anyway. We can almost safely cover the 40-minute drive to Pulderbos with our eyes closed, but how much Ella-Marie is worth it!

Sleeping alone

The photo was taken by Grandpa Jacques. He went to put Ella-Marie to sleep for the first time on Tuesday. By now, we have also been several weeks further in the process of getting Ella-Marie to sleep alone. The tears flow especially when we say goodbye in the evening. Once asleep, everything seems to go relatively well. Of course, the paralysis is not evident. Putting a blanket back on or taking some water for thirst is not yet possible. Our goal for the next few weeks is to make sure that Ella-Marie can really sleep through the night. Even then we are going to see that she will make strong progress again.

First Parent Contact

Never thought I would be able to say this, but about that we actually have the best news: we had a really positive first parent contact! Throughout the years we have known only wonderful teachers. Everyone sympathized very hard with Ella-Marie and looked for the best possible solutions. And every parent contact we were told how sweet Ella-Marie is and how well she does her best.... but that it is still all very difficult. And we too knew all too well that it was not easy for her at school.

This time was different! With 5 doctors, counselors, social workers in front of us, we slid around the table. And every sentence we were told was positive. Ella-Marie is working extremely hard at every possible task. Language is going exceptionally well, to the extent that they are starting to focus mainly on the sight loss and no longer on the actual speaking. At the ergo they are very pleasantly surprised at the progress in the left arm. At the physiotherapist they see Ella-Marie literally taking a step forward and the commitment at school is very good!

Of course, we have to add that all this has to be put in context. Nuclear physics is just not in the cards yet and running a marathon will be difficult, but within Ella-Marie's capabilities she is performing really TOP!

For the friends of the IMG class

Dear friends! Thank you for your beautiful letter. Ella-Marie is manually writing one back! I also have some good news for you! At the parent contact, we asked if Ella-Marie could pop into your class. And the answer was clearly YES! So, together with your top teacher Ann, we will see when we can visit your class.

And on top of that even better news! You may even visit Pulderbos AND Ella-Marie may also visit the IMG one day if you have an activity planned. Could she possibly walk the miles with you? Who wants to push the wheelchair then! :-)

Keep going!

Dear reader, as you can see we are doing well. Next week we have a communion party for sister Olivia and we are going to celebrate with a positive attitude. For tonight we are celebrating with a yummy pizza from Dr. Oetker (the Big Americans are back in town, be sure to try!) and we hope you are going to have a great weekend!

See you in writing!

5 May 2023