12! Yep, you read it right. 12 years! Our little big girl recently celebrated her birthday and was even allowed to do so several days apart. You didn't forget her birthday either, because the amount of cards, WhatsApps and Facebook messages was impossible to keep up with. Ella-Marie enjoyed herself to the fullest.
The day itself
Ella-Marie is still stationed in Pulderbos. After 10 months,
obviously everyone knows that beautiful blond girl with the big
blue eyes. It makes sure that Ella-Marie was allowed to shout
"thank you" all day long. Because it is really amazing to see how
"close" each supervisor is with the children of the living
groups.
The night before was positively stressful, but she finally got to
sleep. In the morning, Ella-Marie got up around 6 a.m. as is her
very good (?) habit. With her cell phone at the ready, she happily
exchanged some messages with the home front. Around 8 a.m. she
heard the attendants getting ready and Ella-Marie enjoyed
pretending to be asleep. "They came to sing me awake daddy!
Actually I was already awake, but I pretended. And it was SO nice!
Everyone sang along!"
Of course, the therapies continued and there, too, each expert made it a point of honor to personally congratulate Ella-Marie. Thus, she was particularly enthusiastic about the therapists' dances and there was frequent laughter when thinking back to the many wishes.
Mama Annelies and little sister Olivia were unfortunately sick. With a temperature of 39 degrees, the fever was so high that a visit to the rehabilitation center was not advisable. Thus, via a video call, one tear did come from laughing and one from weeping. How they would have loved to hug Ella-Marie! On the other hand, mom and sister were very happy to see how happy Ella-Marie was.
Papa Pieter had cleared his calendar as of 4 p.m. and headed for
Pulderbos as quickly as possible. As luck would have it, when
entering the entrance hall, Ella-Marie was pushed right down the
hall in the wheelchair by attendant Sam. A spark of joy shot
through her heart and with arms wide open he shouted "HAPPY
BIRTHDAY sweetheart."
"Hi Dad, I'm on my way to see Simonne. Go to my room".
Fathers of adolescents can probably relate. The heart was ripped
out of the chest directly and without anesthesia. A few red-hot
pins were jammed into it and the whole package then went quietly
smoked on the barbecue.
After some weeping in a corner, Papa Pieter was then invited to join the celebration in the Pulderbos canteen. Some pleasant chats later, the day ended with a nice snooze bath and plus-granny Simonne was allowed to put Ella-Marie to sleep.
Belgian Fries!
One guess what Ella-Marie wanted to eat as a birthday meal on
Friday. It just became the regular Friday appointment at 5:30 p.m.
at "Den Bareel": FRIES! :-)
The "side of mama Annelies" was invited and everyone (other than
sick Opi) slid their feet under the birthday table. Thanks to the
work of months, we could also invite everyone to the "new part" of
the house. And that was particularly enjoyed by the youth, who
turned the space into one big gymnasium and playroom. Sick mom
Annelies had to lie down now and then, but it was really enjoyed
being together.
Saturday and Sunday also saw fine partying. "Papa Pieter's side" traveled to picturesque Heist-op-den-Berg on Sunday with great pleasure. It was celebrated with a take-out feast, as one kitchen has been demolished and the other will be installed this week.
Best gift ever?
How many cards and (virtual) wishes Ella-Marie received! Many presents were also unwrapped. The best present did follow a few days later, because the doctors from Pulderbos came with news about the EEG scan that Ella-Marie recently underwent.
Ella-Marie's left hemisphere is functioning as it should! As to be expected, there is still epileptic activity on the right side, but it does not reach the healthy left side. This was the ultimate goal at last year's surgery, so really by far the best news we could get.
The tapering off of medication continues now, but even there we
are almost at zero. Soon we will hopefully be able to officially
talk about being seizure-free!
That gives a feeling of enormous happiness and a huge relief! Even
though we saw that Ella-Marie was really much better, somehow there
was still a "what if after all..." feeling blowing in the back of
our minds. That feeling too can now be completely put behind us and
so we are looking ahead in full!
Interesting ventilation
And looking ahead we are now also doing so in a practical way. As of today there is literally a hole in our house and only the insulation is holding back some of the cold. There is dust everywhere, lots of moving boxes and the clutter.... it is everywhere. As of the day after tomorrow, that alternate ventilation hole should be filled with a new front door. Not the one from Papa Pieter's recent, awesome "4" front door, but the one from the new entrance to our house!
What else is on the schedule this week? The new kitchen will be installed on Tuesday and Wednesday. The roof will be finished on Thursday and Friday. Water connections are still being laid and in the meantime, Ella-Marie's bedroom and bathroom will also be taking some shape.
Handyman the job! Until the next update!