BLOG - 2017

  

09.11

 

From 6 to 9 November, little Adam went through a barrage of tests at the CF Center in Dziekanów Leśny. We had a pile of board games with us for fun and a team of Adaś's favourite stuffed animals for comfort. Despite having a relatively good appetite, Adam fails to thrive, and we have been referred to the gastroenterology department at the Children's Memorial Health Institue (CZD) to make the decision whether Adam should receive nighttime feeds through a gastrostomy (a PEG)  

 


 

 

03.09

 

Bieg Po Oddech! A 5 km charity run intended to promote physical activity as well as awareness of what living with CF is for the patients and their families. The videoclip below is in Polish; you can see Daddy starting from 2:00 :)

https://www.facebook.com/ptwm.rabka/videos/10155811751328701/

In the mountain town of Zakopane - big brother Krzyś in front of a poster showing Adam's story of living with CF!  

 

 

10.08

 

Sarbinowo!! With lakes and swimming pools being out of bounds due to infection risks, the sea offers Adaś a relatively safe water environment!

 

 

 

1.08

Travelling with cystic fibrosis  This is in addition to The Vest (8kg), two air compressors + nebulizers... 

 

 

 

 

14.07

 

Clinic day in our new, beautiful and shiny hospital.

Our CF team helped us adjust Adam's meds and physiotherapy treatments.

So far so good  

 

 

 

13.07

 

A birthday omelette for Mummy from Adam (90% Adam's own effort!) 
Adaś is a gourmet and junior masterchef all in one!

Adam's appetite for tasty and rich foods helps him fight malnutrition and low weght :)

 

 

 

9.07

 

A screenshot from a fellow CF mum's FB post staying with her child in a Polish hospital (in Poznań).

What you see is extremely dangerous for CF lungs, as during a hot shower mold particles and bacteria such as pseudomonas aeruginosa would get nebulised into the child's lungs... That is why the new CF Clinic in Dziekanów Leśny serving patients from central Poland is such a huge advancement!

 

 

 

19.05

 

Meanwhile... Big Brother's eighth birthday, and little Adi has done a false start - level master When he first tried to touch the shiny chocolate cake with his fingers, he got shouted at, so he found another way!

 

 

  

18.04

 

Easter breakfast is mostly about treats... But Adaś needs to take his meds first!

 

 

 

 

3.03

 

A stunning Polish-language poster for an exhibition depicting the stories and daily lives of CF patients.

 

 

28.02

We now have a new CF Center in Dziekanów Leśny near Warsaw!

It was opened in January 2017 thanks to the tireless efforts of the CF association "PTWM" and the medical teams involved in treating little CF patients.

Why is the new hospital so important? You can find out more from the short movie (Polish language only though), which includes an interview with Mum and footage of Adam's physiotherapy!

https://www.youtube.com/watch?v=HWKOI5hV9uQ&t
 

 

20.02

Polish CF week

 

 

22.01 

Our dearest little tummy-with-a-history! The scars left by the surgeries are not just marks on his skin. They are a daily reminder of the fact that with a smaller intestinal absorptive surface (on top of his pancreatic insufficiency), little Adam faces a heroic battle to maintain his weight above the third percentile.

The meconium ileus-related surgeries resulted in the loss of 60 cm of Adam's small intestine. 

 

Photo credit: Marta Karpińska

 

 

12.01 

 

After two years of observing the skiing lessons of Big Brother Chris, little Adam put on his first baby skis! The skiing conditions are excellent, and the coach is full of praise not only for his progress but also brave attitude and a wide smile. It seems Adam is hooked!