USA conference – summer 2023

21/09/2023 | Niels/Leonie

It feels like a family reunion, but we’ve never met these people before. But just like at a family reunion, there are lots of people that look a lot like each other and have the same ears and mouth.

People that have the same sense of humor and make the same gestures. And just like in families, there are people with the same health conditions, both physical and mental.

Those are like blood relatives that we are spending time with these days.

In the more extended family, there is less resemblance, but they are connected through contact with the blood like relatives.

The extended family cracks jokes that only they are allowed to make and outsiders cannot. The extended family loves the blood like relatives and shares hopes and sorrows and can sometimes understand each other without words.

Together, this one big family is made up of people with Costello syndrome. This summer, our family spent time with 45 other families at the international convention in Denver, USA. We had been looking forward to this for years and now the time had come. We experienced 4 special days with a substantive program. There was an introductory day, an afternoon for siblings, a men’s evening, a day full of lectures by medical specialists, a women’s evening, a day for meeting with specialists to ask questions regarding our individual situations, a memorial space full of candles and photos of those who are no longer with us, a day for roundtable discussions and a festive party night.

We ate meals together, we talked, we laughed, gave each other hugs for encouragement, took pictures. We soaked up all the information to use as tools to help us interact with our own person with Costello. Sometimes this information makes us sad and worried because so many health issues could crop up. It makes us think, makes us alert and often confirms what we already know and experience. All this acknowledgment and recognition feels good to all of us.

We are happily surprised that Mieke lands in a wonderful international group of siblings that connected from day 1. They roam through the halls of the hotel, snapchat, hang out and dance together.

We notice Vera is more aware of her identity and that Costello syndrome is a part of that. Sometimes she becomes overwhelmed with how many people there are. She meets other girls that look so much like her, they could be cousins. And even though there is a language barrier, it feels nice to be around each other.

We take a dive in the hotel pool and revel in the fact that no one is staring at us, like at most public swimming pools. But we do notice the scars that we all have. Scars that tell stories of illness and surgeries that Vera has endured as well or may be in her future, some we hope to avoid. We play in the water to release some sensory overstimulation and enjoy ourselves.

And before we know it, these days are over. We leave the hotel and continue to enjoy another two weeks of vacation and family visit. We have lots more adventures and push our limits. And we are thankful for the beautiful people, gorgeous nature, nice weather and for the fact that we are all healthy during this trip. Such a blessing and wonderful relaxation.

Now we are home again in Gouda, The Netherlands. We get back in the swing of things with school and work. We look at the pictures and have started sharing everything we’ve learned with local Dutch Costello families, as well as Vera’s specialists and therapists. On the inside, a warm feeling of connection remains. And no amount of kilometers or flight hours can change that.

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Vera is 10 years old!

23/06/2022 | Niels/Leonie

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.

Gallery

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Four years old

01/05/2016 | Niels/Leonie

Hello, this is Vera.

trotse 4-jarige op laatste dag TPG Sophia in Gouda

proud 4 years old on her last day at the Sophia rehabilitation preschool in Gouda

This time I would like to do the talking. Since I am already four years old, I felt it was high time. Yes, you read that correctly, I am now FOUR years old! Mom and dad have been fussing over this operation and that’s why they haven’t written about my birthday. They talk about doctors way too much anyways, I can talk about so many more things besides those people in their white coats. But all right, just so I won’t ignore mom and dad completely, I can tell you that the operation worked out really well. On the day after my birthday I had to wake up ridiculously early to go to the hospital, but I was completely ready to go. Just when I was about to put on my flattering operation gown, mom and dad made sour faces because a nervous man was telling them that the surgeon was ill.
Well, I can understand things like that, better next time. And that next time was exactly one week later. Okay, it was no picnic. I laid on the operating table for 3.5 hours and afterwards I felt like someone had been seriously messing with my skull and brain. Turns out the doctor said that he indeed had done just that (no way!) and that everything had gone according to plan. This time I didn’t need a tube in my throat after the operation, I could breathe just fine on my own, thank you very much. And therefore I didn’t need to go to intensive care, which made mom and dad very happy. But I must say, they were very busy with me. I was in pain, didn’t feel very good and felt nauseated. I made sure to let everybody know. I was given morphine through an IV and some other medication which made me feel kind of funny. But I quickly realized that laying still and sleeping a lot would be best. After that, I did my very best to recover and that worked out pretty well. I am a fighter! And so, on the third day after the operation, against all expectations, I was allowed to go home! I wasn’t very talkative yet, but in the hospital they were doing everything my mom and dad could do at home as well (that’s the cool thing about my parents) and at home I could lay against my sister on the couch. Much better.

Since then I have been getting lots and lots of compliments. Sometimes I think I should have had this operation sooner. Because you know, before the operation I didn’t really like to move my body as much. Laying or sitting down felt much better. Standing and walking wasn’t really my thing anymore. But now everybody keeps telling me what a good job I am doing walking with my walker, along the table and climbing some steps on the stairs. I tricked my mom recently. She had put me on the couch and went to the kitchen to cook. I climbed off the couch by myself, grabbed a little chair and used it to walk over to the kitchen. You should have seen my mom’s face when I showed up right next to her, ha ha! In short, the doctor wants me to visit to have a chat and check on me, but I can already tell you: the operation was a success.

Mom and dad still frown when they see the positioning of my feet, I don’t seem to be standing particularly straight or stable. But, hey, one thing at a time. They’re probably going to drag me to the doctor for that as well. They are already talking about an image of my lower back and something about Achilles tendons that are too short and casts for my feet. We’ll see what happens, for now just let me do what I can. I am not crying as loudly at night and my legs hurt less than before, it feels much better now.

But, like I said, I have much more to tell you: That I left the Sophia rehabilitation preschool for instance. I have had a wonderful time there with the sweetest teachers I could imagine. But I think I outgrew the place and I wanted to broaden my horizon. When you do something, you gotta do it right, so instead of a preschool I chose a school in Rotterdam (my dad is pretty happy about the Rotterdam choice, because he works there and feels very at home in that city). The school is called mythylschool De Brug (school for children with special needs The Bridge) I am in Ms. Corrie and Ms. Mieke’s class, which is quite funny because I also have an aunt named Corrie and a sister named Mieke! But to be clear: they don’t look anything alike. There are 7 other children in my class, we’re all buddies because some of them are in wheelchairs, are taking their time to learn to speak or need time to learn something. I feel right at home. And I act like I’ve been going there for months. That’s what the teachers also say about me. In reality I have slowly been adjusting to school after the operation and for now, I go 4 mornings per week and we’ll probably keep it this way for a while. Those four mornings are pretty intense! My energy levels are not top level and sometimes even I forget that my heart acts out throughout the day, sometimes it beats super fast and then it beats normally again. At my new school, we do really fun activities: we sit in circle time, hang up pictures of the things we will do that day, we go to the play room, read books, we go swimming (yes, for real: a swimming pool at school!) and we enjoy listening to music. I have a slight suspicion that I’ll have to do several types of therapy work soon, but for now I think this is already quite enough.

And there is something else I want to tell you: Mom took me to school the first couple of times, but now Janna takes me there. Janna is a cheerful early bird with a huge white van, which she parks in the middle of the street, no problem. I go and sit in my stroller like a queen, then get into the van with a lift and wave goodbye to mom and dad: Bye!! Inside the bus it’s really fun, because lots of other friends from school ride along also. I must say that I am starting to get a bit jealous when I see kids on the bus and at school in wheelchairs. I mean, I am FOUR years old and they still put me in a stroller, that’s why some people still call me a baby. Come on! I think it’s about time I switched out my ride, so my new occupational therapist and I are looking to see whether we can find a mini wheelchair for me. Mom does still pick me up every day, when I go home at lunch time. I’m so happy I get to travel home with my mom. I really like to talk about my day and about who is going to be where and who will be with me. It makes me feel better when I know what to expect.

Well, by now you’ll understand that we’ve had some busy weeks in which a lot has happened. At night, I like to process everything. Unfortunately, this makes mom and dad look a bit tired during the day. I get to see them about five times a night when they comfort me or take me in their laps. Oh well, it will all work out. In the mean time I’ve decided to celebrate all of this by eating ice cream and chips again and by practicing my swallowing skills. And that is so much fun, especially with my big sister Mieke. I say: Bring on the warm spring days! I scream, you scream, we all scream for ice cream!
Lots of love and talk to you later, Vera.