Vera is 10 years old!

I cleaned out a large closet, which had everything to do with Vera.
Our girl is 10 years old now. And even though there are still concerns, there have also been some positive changes. And that’s why we’ve been able to get rid of some things.
Goodbye syringes, mickey buttons, extension hoses, metalline dressings, tubes of cream, freezer bins and liquid medications! For two years now, Vera has been eating everything independently. Every meal, snack and even her medication in pillform (which is about 10 pills a day). After 8 years of tubefeeding, I cannot tell you how special it is to watch her eat so well by herself these days. We take the fact that she develops some food related tics from time to time in stride. In particular when it comes to sandwich toppings, Vera will have a strong preference for one specific option for months. We’ve gone through phases of spreadable cheese, chocolate spread, cookiebutter and currently we’ve been in the hummus phase for months. All sandwiches have to have hummus, even in the morning at the breakfast table we’re surrounded by a strong garlic/chickpea aroma.

More things left the closet. Goodbye nebulizer, liquid medications for the nebulizer, plunger syringes! Eventhough Vera can still be plagued by common colds, in recent years she’s been able to get away with just regular nose sprays, perhaps one inhalerpuff and lots of rest. No more nebulizers or hospitalizations due to a cold. That used to be quite different in the past.
Goodbye diapers, wipes, endless diaper creams and goodbye changing station in the storage room. Another milestone we weren’t sure we were going to make (and neither did the urologist). Since 2021 Vera has been toilet trained during the day and since March of 2022 at night as well. What a difference this makes at home and out and about. And how nice for her skin that had been suffering from wearing diapers all these years.
What remains is a container of medication for her heart and sensory processing during the night, a bottle of eardrops because ear infections are still a common occurence for Vera. What also remains is the cooler for growth hormones. Vera gets a dose of these every night.

The closet has been cleaned out.

The wheelchair stays, soon we’ll size up to a larger one again. The splints in her shoes also remain. Walking is still something for short distances as her legs and feet continue to be something we need to keep an eye on. We hope better splints will help. Or customized shoes, perhaps one day surgery. All in all this is probably the limit of Vera’s mobility. Her tricycle and the tandembike we like to take out to go shopping remain. What also remains are the hospital visits to see the pediatrician, endicrinologist, cardiologist, ENT doctor, eye doctor, oncologist, rehabilitation doctor. And in the background: the neurologist, orthopedist, urologist and dermatologist.

But what remains the most is a 10 year old schoolgirl who likes to be both handyman and princess, wants to dance and hang on the couch, makes us laugh and tires us out endlessly with her early rising, cognitive disabilities and a hint of autism.

But that’s Vera: our sister and daughter.




Vera going for a walk

As promised in our previous post, we would like to share some more of the positive things that have been going on in Vera’s development over the past couple of months.

Since March Vera has been on sleep medication. While this doesn’t mean our nights are completely smooth, they are certainly much better than they have been! It’s absolutely wonderful that we ourselves are much better rested. But we particularly notice a big difference in what this means for Vera and her quality of life. She now has the energy to learn. And Vera likes learning. At her therapeutic preschool (from Sophia Revalidatie) she gets praise for her eagerness to learn and for her perseverance.

And we realize once more how hard Vera has to work at things that may come natural to typical developing children. She has to work hard because she is a heart patient, her entire body works differently, has lower muscle tension, limited vision, different proportions and feet that are quite bent. But she is making strides in development.
In the past couple of months she has learned (with the help of the physical therapist) to get herself to a seated position from lying down. She can climb into her (low) chair by herself.
And she has a walker that she is getting more and more confident with as we practice going for small walks outside. Vera loves anything with wheels; she has her little red scooting car, a wonderful pink scoot bicycle, her blue walker and whenever she sees a pedal car or small bike, she is very keen on trying it out, even though she is often too short.vera-schoenen
And Vera likes to walk without her walker as well. She can’t quite do it by herself yet, but is doing better and better while holding hands as well as along the table or wall. Her custom shoes are quite literally of great support in this. And she has discovered climbing! The small kitchen stepladder has become a playground, as well as the open staircase in our living room and small stoops in shops. The beauty of Vera is that she teaches us to celebrate what she CAN achieve. So we don’t focus on the extra effort we have to put in (paying more attention to where she is wandering about) but that we are happy for and with her when she accomplishes something new.
We also notice that while we can think of goals she should aim for, she certainly has her own agenda as well. We were trying to work on playing independently for longer periods of time for instance. But instead, Vera decided to put her energy into developing her motor skills further. And because she can now get to the places she wants to be more easily, her play has improved as well.

It may sound as though Vera is walking and biking and playing all day; but we do notice that her energy levels are definitely limited. We are noticing improvement in her energy levels over time, but it is still something we need to take into account when planning our day or week so she doesn’t get overloaded. Or overstimulated, such as being around large groups of people (at birthday parties, in shops, at church etc.) after which she kind of shuts down and often has a restless night. So we are still trying to find the balance between what we can and cannot do during a day or week. Oddly enough, we currently have to watch out we don’t overestimate what she can do because she has so much more energy than she used to…

And so a new goal we have come up with is: how can Vera have some down time between all these developments so she can keep up with herself?
Boy, 3 years ago while sitting next to the incubator at the intensive care unit I certainly could not have imagined that I would have to slow down this little girl.
A big hand of applause for Vera!


Interview voor KinderThuisZorg

costello-interviewIn het voorjaarsnummer van het magazine van de KinderThuisZorg is een artikel geschreven over Vera in ons gezin! De journalist heeft ons per telefoon geïnterviewd en ik heb zelf de foto’s gemaakt en aangeleverd. Dus de gezinsfoto is in de huiskamer gemaakt met 10 seconden zelfontspanner 🙂

Erg bijzonder om zo een persoonlijk verhaal te vertellen, dat vervolgens in een oplage van 5.000 stuks verspreid wordt. Ook in het ziekenhuis zagen we hem overal liggen en we zijn al een aantal keer aangesproken door andere ouders, met positieve reactie overigens.

Een van de redenen om hier aan mee te werken is bekendheid te krijgen voor het syndroom. Maar ook om andere ouders ons verhaal te laten meelezen hoe we dit ervaren.

Het artikel met ons verhaal is hier te downloaden als PDF


Daarnaast is voor dit magazine onze vaste kinderarts uit het WKZ geïnterviewd over het Costello syndroom en wat dat is en medisch gezien betekent.

Het artikel waarin onze kinderarts uitleg geeft over het Costello syndroom is hier te downloaden als PDF


[this blog is not translated; the articles are in Dutch too, about our family and about the Costello syndrome in a Dutch magazine]