To spend the time in the car usefully, a podcast is on regularly in the 8 months that we drive to Pulderbos. The podcast "DS Vandaag" looked at the use of vitamins in more detail. Whether they are useful or not, we leave entirely to your own opinion. But there is no question that vitamin D deficiency during the winter months is very plausible. A consequence of this can be fatigue and dejection. Such is the case with Ella-Marie, who is experiencing her first winter dip. But as always, we make every effort to tackle a negative feeling with a positive attitude. Below is the account!
Winter dip
In the first week of November, not everything went the way it
had in previous weeks. Ella-Marie was not feeling optimal in her
skin and Pulderbos got to know it! The otherwise oh-so-good-humored
girl showed some rebellious antics here and there and explored the
boundaries of the permissible. For example, she knows only too well
that she must stay in the living group area. We are talking about a
small corridor to the rooms and a play and dining area. For the
first time in her Pulderbos career, Ella-Marie did go outside the
imposed boundaries, uninvited. This caused hilarity for her, but
rather some trouble for the supervisors. She was somewhat
rebellious towards the therapists and did not always cooperate
well.
In all fairness, we can also understand her, because living with
physical limitations in a place you can't call "home" and then full
on adolescence is quite an explosive cocktail. And so suddenly
there was the first down week in Pulderbos. And even during the
weekend the line continued. She was touchy, had to cry and
regularly became angry. It was one of the first times that there
was really less fun to have them at home.
During a changing moment after swimming, the climax was reached.
Daddy Pieter is not the most patient man and Ella-Marie could
notice this immediately. After some adolescent eye twitching, silly
remarks and some challenging, it was reported that she would have
to solve it all on her own in the dressing room, because being rude
does not immediately make others want to help.
And then Ella-Marie broke down.
Crying, she managed to say that she does feel very good in
Pulderbos. She really likes the counselors, still likes to do her
exercises at the kine/logo/ergo, but "It's really a very hard year
for me, Dad." She misses school terribly and wants to live a
"normal" life.
Of course, every parent's heart breaks at that moment and we took ample time to discuss everything that does make her happy and how we are going to address the negative feelings. And so we start looking forward to the next paragraph!
Looking forward to the positive
It is still abundantly clear that we had to have the surgery. To this day, despite tapering off the medication, no seizures have been noticed. Ella-Marie is much more fluent, can talk about many more things and, in our opinion, is epilepsy-free.
She also exercises every day to limit her physical disability as hard as possible. Thus, thanks to the collaboration with the physiotherapist, we can proudly report that Ella-Marie can now stand up by herself when she sits on the floor. And so we also try to learn something new every day.
It is particularly hard for Ella-Marie that she cannot go to IMG. She misses her classmates very much and she sincerely asked if she could go to school normally for one day. One day like her friends really get to take classes in her home school.
You guessed it! That is something for top teachers Conny and Jessie, who together with clinical remedial educator Elke do everything for the well-being of our daughter. An email was sent at the end of the weekend asking what was possible, and a date has already been set for Ella-Marie to have a day of "normalcy." Never did we expect to see someone so happy because she can go to school, From the moment she knew that the mail was out the door, her whole mood has changed. Ella-Marie is very happy and is full of positivity again. She cooperates well with the therapies, she is brisk in the living group and gives nice warm hugs again. The negative spiral has been broken!
Foot and hand splint
Physical discomfort is part of rehabilitation. But what we saw
on her foot now was out of proportion. The small blisters and red
skin on the bottom and side of the foot led us to suspect that the
splint was causing irritation. In addition, the pressure from the
splint is causing inflamed toenails. So a very painful
combination.
What also stands out here is the amazing network of friends we have
behind us. Problem? Just a quick email and call! After seeking
advice from 3D printing experts and surgeons, it is obviously much
easier for us to form an idea of what we as parents want for
Ella-Marie.
And again, nothing but praise for doctors, counselors and physiotherapists. After brief notification, everything was done to make Ella-Marie better as soon as possible. Coordination between doctors, physiotherapists and the supplier of the splint are already behind us and tomorrow, Friday, November 17, we will get additional explanations. An update will, of course, follow in a future blog.
Spoiler alert
We can report very little yet, because we promised. But what we can already do is let you take a sneak peek at the facebook page of Pulderbos.
In the week of Dec. 11, we're going to deliver you all the details!!! :-)