Category Archives: algemeen

2 Comments »

USA conference – summer 2023

|

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.

4 Comments »

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.

.

.

Deze afbeelding heeft een leeg alt-attribuut; de bestandsnaam is glijbaan-scaled.jpg
4 Comments »

From tube feedings to tacos

|

Eight years ago, now. I still remember how surprised I was that my baby couldn’t eat. And how sad I was about that. Food is so much more than sustenance – food is also: togetherness, sharing, smelling, tasting, enjoying, discovering, quenching hunger, growing, celebrating…

A couple of hours after Vera’s birth, a feeding tube was put in from her nose to her stomach. After a couple of months, that feeding tube was replaced by a port in her belly that connects to her stomach. These feeding tubes were her lifeline because, like most children with Costello Syndrome, Vera wouldn’t eat. She tried, but her fine motor skills and sensory issues got in the way. Her cell signals are different and do not send a message to the brain that food is needed to survive. Tube feeding was the only way for years.

We have gone through quite a journey in this with Vera. For those who know us or have been reading along with us, you may remember we went from pumped breast milk through the feeding tube to special tube feeding formula that caused vomiting and diarrhea, to discovering the blended diet: simply putting our daily meals in the blender and using syringes to feed Vera. This brought an enormous improvement in Vera’s quality of life. She received real food through the feeding tube, precisely the same healthy food we were eating. Seriously, when I start talking about the blended diet, I sound like a total spokesperson. And in the meantime an entire team of therapists worked alongside: pre-speech and speech therapy (yes, speech therapists do not only help with speaking but also with learning to eat: the movement of mouth and tongue are crucial in learning how to eat), there were play sessions with food and Vera did all sorts of exercises to learn to deal with different textures.

When you have a child with disabilities, you quickly discover how complex seemingly simple and mundane everyday tasks can be. Learning to eat proved to be this complex system of feeling hunger, smelling food, tasting food, feeling brave enough to touch food, being able to endure the textures of food in your mouth, making the right movement with your tongue, chewing and swallowing and all of this without gagging or choking. And then to keep eating and not be done after just a couple of bites. Vera has also had feeding therapy at school. She would go to a special room and practiced eating one bite of a sandwich and then would return back to class. As parents, we also received great support from the EAT-team at Rijndam rehabilitation.

bij David’s Gelato

There were lots of fun moments: we may have gone to the gelato place in town way too often over the course of a couple of summers because ice cream was just about the only thing Vera enjoyed eating. There were some tricky moments: Vera could eat an entire piece of cake with whip cream at a birthday party, but when we tried handing her a boiled egg at home, she would gag. When she really wanted to join us in eating our dinners together, but simply couldn’t and would get frustrated. It was a long and slow process with some steps forward, but then with illness, a big slide backwards again.

But we were making progress. At a certain point, she got enough food in her so she no longer needed a tube feeding at school. In the mornings and evenings, she would still receive healthy homemade tube feedings with lots of vitamins to round out her caloric intake.

And then came the big stay at home period due to COVID-19. After some initial confusion, Vera seemed to be doing well with staying at home so much. Everything was very predictable, the family was always complete and Vera had more energy. To our big surprise, she used this energy to focus on eating. Eating more, eating new things and crucially, eating a big enough dinner. There were days with some trepidation that we could skip the evening tube feeding because she really did eat a decent amount of food. Days where we could skip the morning tube feeding because she ate enough breakfast. And suddenly we realized she hadn’t had a tube feeding in 5 days. All of a sudden, a week in which we didn’t use the blender to make tube feedings. And 5 days turned into 5 weeks without feeding Vera through her Mickey-button in her stomach. What a milestone! Even some of her medication Vera now swallows on her own. Some other meds are still too difficult (a pill that is too large and liquid heart medication that is critical and has to be an exact dosage).

There are still some bumps in the road here and there. But currently, we no longer regard Vera as a tube fed child, but as a difficult eater. Like with many children: fruits and vegetables are the hardest and we use tricks like hiding them in soup or muffins or with some whip cream on a banana. But that is okay, it is a new phase. Vera still has to gain lots of experience in eating normally. But it is good enough. And good enough is fantastic.

For now, the mickey-button in her stomach stays where it is. We like to see how things will progress for a couple of months. To really see and experience that this is the new normal. And we will also have to see how things will go when she is tired, ill or tense. Whether things will continue to go well, and we can really start living without tube feedings. Vera has had the mickey-button for eight years now. It’s a part of her and we don’t need to get rid of it just yet. Vera also perceives it as a necessary part of her body even though she has now asked us a couple of times whether it can come out. Regardless: I think it’s time for a return trip to our local gelato place or for cake because we definitely have something to celebrate!