Born TOF/OA with Vacterl and with lung problems, is tube fed, Dances Ball Room and is winning Medals

During lockdown Filip and his sister Olivia started practicing dancing together as couple. They had a zoom dance lessons and after almost two years when we were able to go back to the studio their dance teacher made them officially a couple. It’s great because they practice almost everyday together at home plus they have the dance classes and lessons in Wojtek Potaszkin Dance Academy with their best and favourite teacher Wojtek.

Note bag on Filips back (Feeding Tube)

On 20th November 2021 after 2 years not being able to travel due to Covid-19 and Filip’s health condition and lung issues we were able to fly to Lithuania for Filip and Olivia very first live International Dance Competition! They were both delighted and so happy for the trip.  I have started to pack up a week earlier to have Filip’s medical items for feeding tube ready and to be sure that I don’t miss anything.

We woke up very early on Thursday morning to get to the airport. When Filip wakes up he needs a lot of time to get into his form. He usually vomits or is nauseous due to his gastroparesis condition. He is on antinauseus medications regularly. We all woke up together with my husband, got ready and drove to the airport.

Tube feeding bag in front, with pump feeding while on plane.

Very exciting times ahead of us. We met our dance group from our Wojtek Potaszkin Dance Academy at the airport. We got to the plane. Flight passed very well. When we landed in Vilnius, Lithuania a man, driver picked us all up and drove over 60 km to a small town called Molétai. This is the place where competition was going to go ahead. We got to the hotel.

Born TOF/OA with Vacterl and with lung problems, is tube fed, Dances Ball Room and is winning Medals

Born TOF/OA with Vacterl and with lung problems, is tube fed, Dances Ball Room and is winning Medals

We visited few places and went for a walk to the park which was located at the lake side.  It was really nice. Children enjoyed the swing at the lake side and the fishermen’s boots and a fishing rod where we could take pictures.

Still wearing his back pack.

After our trip we all went to the restaurant.

It was a difficult time for me and for Filip. We never go to a restaurant unless it is a family occasion like Wedding or Christening because of Filip’s fear of food. He has ARFID (Avoidant Restrictive Food Intake Disorder). He chokes on foods due to his TOF/OA plus he has gastroparesis which doesn’t help because his oesophagus, stomach and intestines digest food very slowly. Last year we ended up in the hospital because Filip stopped eating. He lost 1kg during 10 days while staying in the hospital (he stayed for over 3 weeks). He ended up with NG tube and 3 months after he had a surgery to place a GJ tube into his tummy. And since then, he is wearing backpack 20h a day with his feed and feeding pump.

So going back to the restaurant everyone ordered some meals except Filip. My daughter is a very picky eater too she didn’t want any food, but she finally decided to have some French fries. I asked if Filip wants some chicken or chips or ice-cream, whatever he likes he can have. He refused to eat anything.

I could see fear in his eyes.

With someone who IS AFRAID you cannot comment on eating, or push THEM to eat because, it makes opposite reaction, and child or whoever may stop eating completely

When everyone finished their meals, we went to the hotel. Filip and Olivia have been practicing dancing before the Competition in the hotel room.

After they finished I made Olivia a lovely hair for the next day Domino Cup 2021 Dance Competition.

This was their first time competing live Internationally.

. I was a bit nervous how Filip and Olivia will make it and I don’t mean the results I mean if they won’t be to stress to go out to the dance floor. I was more stressed then them. When their events started, they got called and went to the dance floor and did their best. I always tell them: “You have to work hard to succeed but I want you to enjoy it.”

There was over 30 couples dancing in Filip and Olivia events.

They danced in 3 events and came up 8th place, 17th place, and 20th place. They did really well.

We are so proud of them. And especially it was their first live competition abroad as I mentioned before.

During the day of the dance competition Filip didn’t want to eat anything even being disconnected from his feed he wasn’t hungry at all.

That breaks my heart. Together with our whole group we ordered pizzas for all of us. When Filip noticed mushrooms on one of the pizza he said he doesn’t want it. There was other pizza with ham on it, so he took 3 bites of it. He had those 3 bites and some water through the whole day…

Born TOF/OA with Vacterl and with lung problems, is tube fed, Dances Ball Room and is winning Medals

We parents have made a surprise party for the kids, with the cake, balloons and sweets. Filip didn’t even wanted to see what cake it is, Olivia had a piece but nothing else and Filip didn’t touch ANY food.

After the party everyone got into the rooms and off to bed.

The next morning it was a day for returning home. We had a driver who dropped us to Vilnius. The flight was in the evening, so we had a whole day to do whatever we like. My husband and I decided that we want to go to see the Old Town and The Gate of Dawn. The Gate of Dawn is a city gate in Vilnius, the capital of Lithuania, and one of its most important religious, historical and cultural monuments. It is a major site of Catholic pilgrimage in Lithuania. We are Catholics and it was so important for me to be there, see it and could say a prayer especially pray for Filip and for his health to improve. We all went inside to pray. After we went to see the Old City. It is really beautiful there.

We went to the traditional restaurant and Filip wanted to eat some hash-browns. We make those at Poland and Filip likes them. Lithuanian and Polish cuisine are very similar, some are the same. He had few bites of his ordered meal and then I asked him and Olivia if they would like some ice-cream for dessert. They both had some. Filip had only scoop of chocolate, but he ate more then half of the scoop which is good.

Time passed very quickly but it was a great time in Lithuania. We went to the airport.

We got medals,

New beautiful memories and new experience.

It was amazing time.

Hope we will be able to go abroad to compete in dancing again.

From owner of this Website, Stephen Wyles.

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