We are going to Manchester!

Wow, what blessed, lucky people we are. Within a week we raised the money we needed to be able to go to the Costello Conference in Manchester! We can’t thank you enough, dear people. This means so much to us. It’s so wonderful to have your support.

We’ve booked the tickets and made hotel reservations.

Now we have to take a good look at what else needs to be arranged. Because travelling with Vera is not standard travelling.

She may be 3 1/2 yrs. old, but she is not walking by herself yet. This means we need to be able to get all the way to the plane with our custom stroller (fortunately, after extensive communication with the airline about how small we can fold it down, the stroller will be considered as a wheel chair).gesprek-vliegmaatschappij

We’ve also requested a letter from our physician to be able to bring her medication. Because Vera cannot be without her medication (for her stomach, heart, airways and sleep) we need to keep her medication in our carry-on luggage. We cannot risk losing the medication in checked luggage. But all of Vera’s medication is liquid and these days liquids are not looked upon favorably on air planes. Luckily, with the physician’s letter and correct labeling we are allowed to bring her meds on board. But we may have some interesting conversations while going through customs.

medicatie_veraAnd then there’s Vera’s food to consider. All her nutrition goes through her Mic-Key button (feeding tube that goes directly into her stomach). We make her food ourselves by using a blender and making smooth purées. It is hard to bring a large supply of purées because they might go bad. But if we bring them frozen, it may not thaw in time on the short flight and we don’t want to risk that. So now we are contemplating whether we should bring the very heavy blender with us to the UK (as well as a converter) or not and I am also experimenting with creating prefab food by blending dry foods such as muesli and freeze dried meals so we only have to add liquids later. That way we won’t need to bring appliances. I’m sure we’ll find a way to make it work, we still have a month of preparation time.

And finally, we have to talk to the hotel about the bed we need and whether we can use a refrigerator for medication. In short: this trip will be anything but standard! But for the most part we are very much looking forward to the conference.

We look forward to meeting up with other children and adults with Costello syndrome again and with their parents and siblings. To exchange experiences and be amazed at the similarities in physical appearance of all the people with the syndrome like they could all be related. Have a look at Costellokids.com. And of course the substantive and educational lectures and conversations with themes such as heart problems, behavioural issues and growth differences. Mieke is especially excited about the fact that she will be flying on an air plane 😉

We will keep you posted. And again: thank you for making this possible for us!






Positive developments

“Have some leniency with her”, Vera’s eye doctor said at the beginning of her life. What he meant is that we needed to be patient. That she really would develop, but that it would take time. More time than with a typical developing child. And he is right, slowly but surely we can see an upward trend with Vera.
One of the main characteristics of Costello syndrome is developmental delay. Everything is very slow (or in some cases doesn’t develop at all) and we see this in Vera also. But if we look at all the facts, we can see several jumps in her development.

The first jump was early in her life, it was the moment she was no longer in intensive care and came home with us for a couple of weeks. During those weeks we saw progress, until another hospital stay followed and things halted again.

Vera met sonde

Vera met sonde

Sonde Vera er uit!

Sonde Vera er uit!

A real jump came the moment the feeding tube came out of her nose because she received a PEG (feeding tube in her stomach). The negative sensations in her nose and throat were gone. This really benefitted her, in particular in making sounds for instance.

On vacation in the summer of 2013 we noticed she was feeling well and that her development continued. Being outside often with nice weather and always having people (without white coats) around to smile at were exactly what she needed and are things that she enjoys.

Zomervakantie met Vera

Zomervakantie met Vera

There have not been any more hospitalizations since October 2013 and a new development in play and discovering the world is taking place.
And then the biggest step to date; this February we made a change in her food. With tremendously positive effects. In the past there were problems with her bowels, she had cramps and ongoing diarrhea. A real solution had not been found. She would often spit up food and mucus several times a day; for sure in the mornings, but also often in the middle of the night so that we had to change all her bedding.
From our closed Facebook-group for parents with a child with Costello syndrome we got the tip that the special tube formula for children who are lactose intolerant caused problems in some children when used for a prolonged period of time. It is unclear why. After all, it is the most allergy free food in liquid form that contains all necessary nutrients. In consultation with our main pediatrician we stopped the special formula for a couple of days as a test and substituted with pure soy milk as her main source of nutrition.

The effect was that within a couple of days she stopped spitting up her food, produced less mucus and for the first time of her life had a solid stool. Her skin calmed down, was less splotchy and even somewhat softer.

Naast medicatie geven we ook groentensap via spuitjes over de sonde

Naast medicatie geven we ook groentensap via spuitjes over de sonde

A week after, she even slept through the night for the first time in her life. Unfortunately, the latter was just the one time.

It made such a big difference that we have switched to our own food. In the USA a so called ‘blended diet’ is used: you puree your own food in the blender so it can be administered through a feeding tube.
And so now we are in the kitchen for an hour every day weighing grams, calculating the calories, taking notes in a food diary and pureeing with the blender or the slow juicer (thanks to donations!). Grinding up sunflower seeds, mashing avocados, pureeing cooked rice, juicing vegetables: it all turns into beautiful porridge.
Instead of using the food pump with a very slow drip of two hours so she wouldn’t spit up, feeding her now only takes 20 minutes per feed.
Only the first and the last feeding of the day are still by food pump (soy milk with baby cereal), but we no longer have to get up out of bed in the middle of the night to turn the pump off and rinse all the equipment out…


Slowjuicer zodat groente en fruit vloeibaar over de sonde gegeven kan worden











It seems like making your own food would take more time, but not having to change her bedding and not having to change her clothes at least twice a day due to her spitting up actually saves us time. And above all: it gives Vera so much more quality of life that we gladly do this for her.
And because she no longer has diarrhea and is no longer spitting up, she is even more cheerful and likes to explore more. She is even more interested in solid food. So with every meal, she joins in and tastes, sometimes she chews a little and sometimes she even swallows a little. And, at two years of age, this is a very good development for someone with Costello syndrome.

Video food therapy: