Blog 2016

 

 

11.11 

 

Horseriding!

Despite the weather getting more and more chilly Adaś continues his exercises on the patient Monet.

The exercises help him strengthen his back and abdominal muscles, which is important from the point of view of maintaining lung capacity.

     

 

 

11.09

CF parents' physiotherapy workshops. We learnt about new equipment as well as new techniques and tricks to help us with patient compliance (yes, this is when the child absolutely WON'T do his treatments! .

 

 

18.09 

Adaś can swallow his Creon capsules whole!!!

No more appleasauce, finally the capsules will be sure to open in the duodenum, where they are supposed to be doing their good work ;)

https://www.youtube.com/watch?v=lxTdPdSrE00&feature=youtu.be

https://youtu.be/t7rzOxVLiRQ

  

02.08

Two weeks ago Krzyś was looking intently at a photograph of his new-born cousin.

"He's heathly, isn't he?" he asked. "And Adaś was born sick".

We know that Krzyś is extremely distressed about his baby brother's illness and he still remembers the difficult moments after the diagnosis, the stress, the crying, the time spent in hospital.

Despite the daily dose of brotherly scuffles, Krzyś and Adaś love one another to bits. The picture below shows Krzyś gently touching Adaś for the first time, deeply in awe of the little creature in the carseat... Last week the brothers decided to sleep in one bed for a night or two and held hands even in their sleep :)

We try to live as normal a life as possible given Adam's illness and impress that philosophy upon the boys. After all, it is not how long but how you live that matters, and the most important thing is to be surrounded by the people you love. And love is something that little Adam has plenty of!

 

22.06

Eating is always a bit of a tug-of-war and sometimes Adam makes a run for it when Mommy wants to give him "just one more bite".

Keeping one's weight up is extremely important for slowing down the progress of lung disease and it helps young CFers fight infections. We keep worrying that Adaś is so little and fragile. We buy various milkshake-style medical nutrition products to help our little munchkin maintain his weight.

And that is no small feat, since little Adam not only is pancreatic insufficient but also has much shorter intestines; he lost a significant portion of his small intestine due to intestinal blockage (meconium ileus) at birth (still, even after the reconstructive surgery, he was the bubbliest baby of the entire ward! http://adas-muko.pl/index.php?show=40 

https://www.youtube.com/watch?v=vOKAFLnGI2E&feature=youtu.be

 

11.06

Home-made Star Wars chocolates - coconut oil, cocoa and maple syrup.

Coconut oil is great for CFers as it mostly contains MCT fats, which need less enzymes to broken down and digested than regular fats. Both boys were delighted!

 

9.06

Our medicine cabinet!

These are just the ones we keep at hand for everyday use :)

 

13.05

"Mommy I love you so much for cooking us such delicious things!", said little Adam gorging on turkey breast with curry, coriander and coconut milk. Awwwww J

 

 

 

8.05

Our beloved Vest died yesterday....! Until we can get it repaired or replaced we are back to manual CPT (aka chest pounding)...

UPDATE: After nine days that seemed like eternity we received a new air-pulse unit from the Colorado-based www.medafore.com. Thank you!!! 

 

26.04

Happy Birthday Adam!! Many happy returns! 

 

23.04

Please keep Adam in mind when filng your annual tax returns! The 1% tax deduction scheme helps us raise funds to give Adam the medical opportunities enjoyed by CF patients in Western Europe and the US, where the life expectancy is ten years longer!

In Poland many therapies and drugs (such as the antibiotics Cayston and TOBI and the latest Orkambi treatment) are not reimbursable. Help us raise money to finance Adam's care!

KRS No. of the MATIO Foundation: 0000097900

Cel szczegółowy 1%: „Na leczenie Adama Majka”.

Thank you! 

 

 

 

8.04

A large playground with only Adam and another boy looking a couple of years his senior. After roaming the playgound for a few minutes the boy decided that a younger companion is better than no companion and decided to make friends. He approached Adaś saying: "Hi, I'm Błażej". Adam shook his hand solemnly and said: "Adam Majek. Good afternoon."

So young, so professional!! :)

 

30.03

We hope that the salty sea breeze will go some way to unblock Adam's persistently congested nose. Adam enjoys the benefits of being on vacation and never misses an opportunity to have an outdoor dessert (with Creon, of course) on the lovely promenade in Sarbinowo.

 

 

 

 

 

23.02

 

Physiotherapy can be fun!!!! 

 

 

 

 

 

15.02

In English-speaking countries, children are taught the little rhyme "COUGH AND SNEEZE? ELBOW PLEASE!", which helps them remember that when you cough or sneeze and do not have a hankerchief at hand, you should cover your mouth with the inside of your elbow and upper arm. If you cover your mouth with your hand instead you risk spreading your viruses and bacteria onto door knobs, bus handles, money, elevator buttons, where they can be picked up by other people!

It is estimated that up to 50% of all infections could be avoided by the proper washing of hands and by coughing into your elbow!

 

 

  

 

 

 

 

 

 

29.01

Yesterday an X-ray showed areas of parenchymal density in Adam's right lung. It was a tangible reminder of something that we try not to thing about on a daily basis - that this happy, bouncing little boy is being slowly consumed by an incurable disease.

We instantly remembered the 'black week' of the Polish CF community last autumn, when two little girls (an 8- and a 9-year-old) and an 18 year old were claimed by the disease in a matter of days. To fend off panic in moments like this we tell ourselves that we do everything we can for Adaś, we protect him from infections, do his physio three times a day, give him tons of medicines, try to keep his weight up, and, above all, try to make him feel he is living a normal happy life. 

We remain hopeful that soon better therapies will become available (and will be affordable in Poland).

For now, we are thankful for each day Adaś stays relatively healthy and try to keep the dark thoughts at bay. We are here and now, and little Adam is just like any four year old - giggling a lot and cramming plenty of mischief into every day :)

                                                                            

 

28.01

Just a regular day at the Warsaw clinic...!

 

The Warsaw clinic is notoriously crowded and poorly organized, so little CF patients have to wait in several lines and be shlepped between different buildings of the large hospital complex to attend various tests and visits.

We cannot wait for the new Dziekanów hospital to start seeing patients in the rooming-in system!

Here I am invariably paralysed by fear of horrible viruses and bacteria, which I "see" everywhere in this old and cramped building...

 

 

27.01

Last Friday we visited the Dinosaurs Live exhibition! (www.dinozaurynazywo.pl)

At first we were reluctant to go because, as a rule, we avoid taking little Adam to public places during flu season. Luckily, thanks perhaps to the very cold weather (-15 degrees C) there were just a few guests in the gargantuan tent.

Adaś and Krzyś were delighted to observe the mechanical dinosaurs. Big brother Krzyś stayed at a safe distance, while Adam the Brave kept trying to climb the railings to check if the dinosaurs were really 'just' robots!