Children's Hospital in Utrecht, floor 3. Also known as the Panda floor. Here we are cozy in a single room. The previous days brought everything we expected. We are happy to give you an overview.
Physical
The thing that stands out the most is that Ella-Marie is sleeping A LOT. She sleeps, she sleeps and she sleeps some more. Not surprising, considering that this is the first time in 7 years that she is not having epileptic seizures. And that, my friends, is by far the best news we can give you. She has not had a single seizure at this time!
The anti-epileptic medication does still remain in effect. We are not going to taper off until we are several weeks without seizures. This is normal practice after surgery.
Right now, Ella-Marie is not yet able to sit independently. Her
arm and leg are effectively "physically very limited." You ask for
a silver lining? You get it! When we tickle her foot, there is a
reaction. When we ask if she can move her arm, a little movement
comes.
Of course, this is all still very minimal, but it gives enormous
courage to know that there is still "something." It is with this
something that we are going to work. Working every day to get more
feeling out of it!
Yesterday, March 14, she was already in the wheelchair for 10 minutes. Today an intensive physical therapy visit showed that there are very small improvements. With a lot of support, she is learning to sit upright again.
The negative is the neck and headaches. The neck pain comes after overstretching during the seven-hour surgery. The headaches ... well, drop a hammer on your head and everyone knows where the pain will arrive. Add to that a small bedsore and you can understand that Ella-Marie doesn't always wake up happy.
Mental
How well she is doing. Really, we are REALLY proud of her.
Ella-Marie sometimes complains (rightly so) about the pain, but if
you tell her to sit up straight, cooperate with the
physiotherapist, stay awake for a while, ... she does. She can
enjoy a hug, she shows genuine gratitude when we massage her over
and over again.
And complaining about the disability? No, absolutely not. "That had
to be done against the seizures, Daddy".
Today the grandparents and Olivia came to visit. In between naps, Ella-Marie showed how vigorously she tries to sit up and ate delicious fries with the sister. That sister does not always have it easy, which is also the reason why mama Annelies drives home with her for a day. But Olivia is helped so much by the grandparents, Simonne and teacher Els. For the latter we are looking for a genius gift, because she made sure that Olivia could finish all her work perfectly and that she could do her tasks with great enthusiasm. Suggestions for a good bottle of champagne we would love to hear! :-)
What a support!
You guys are great. REALLY awesome! We received so many sweet messages, so many questions about where to help and so much love. It is incredibly heartwarming to see how many people sympathize with Ella-Marie.
It gives courage to continue. To take that extra step in more difficult moments. It helps both Ella-Marie, her parents, sister and immediate family. Thank you!