Adam's Blog

 



 30.12

We topped off the very eventful year with a round of antibiotics.

Because Krzyś also had a nasty cough both Brothers enjoyed extra helpings of their favourite cartoons during their joint inhallation therapy :)

 

During pulmonary exacerbations we do between three and four inhallations per day. The Vest system (which you can see to the left of the couch) is a real boon helping us to shorten the time needed for a single treatment. Because the Vest is very expensive (a new unit costs almost USD 10,000), we bought it using the funds deposited in Adaś's charity account. The funds we collect come from sources such as the donate-1-percent-of-your-tax action, private donations or charity auctions, e.g. the auction of the invite for a Meet&Greet event with Real Madrid (see the post of 14 August 2014)!

 

 

   

 30.11

On 28, 29 and 30 November we attended a CF conference and workshops organized by the MATIO Foundation.

The schedule for the first two days was crammed with presentations and sessions devoted to genetics, pulmonology, gastrology and transplantology, which is why on the third day we were very pleased to participate in a cooking workshop where a chef with his team showed us how to prepare delicious meals for our little ones using Nutricia Metabolics products such as Milupa Cystilac.

 

  

 

 27.11

Boredom didn't set in for even one second in November! Big Brother Chris underwent an adenotomy at the beginning of the month, and we managed to organize two more trips to the seaside - our favourite West Pomeranian resort of Sarbinowo and the Gdańsk district of Jelitkowo, where Adaś was particularly impressed with how the seagulls skillfully caught every piece of bread he threw to them in mid-air! 

 

  

 

 20.09

In September Adaś visited the Institute for Tuberculosis and Lung Diseases in the mountain resort of Rabka to check up on the condition of his lungs. The checkups commpleted, we enjoyed the lovely summer weather and refreshing mountain air.

 

  

  

14.08

  

The charity auction we organized for little Adam was a resounding success. The organizer or the SuperMatch event, Polish Sport Promotion, kindly donated an invite to a Meet & Greet meeting with Real Madrid players and the manager at the Hilton. The winning bidder got the opportunity to be part of a select group of guests who could meet the players in person, take a picture with them and get their autograph!

 

The auction was organized by the Matio foundation and had the status of a charity auction at the Allegro auction portal, which means that all of the proceeds of the auction are transferred to Adam's dedicated subaccount to be used to finance his treatment and care.

 

We were extremely happy with the outcome of the auction not only because the bidding ended at the staggering amount of PLN 15,600 (EUR 3,700!).

 

The person who got to meet Real Madrid players was the 25-year-old Marek Duniec, an ALS sufferer and a staunch fan of the team. He received the invite thanks to a group of wonderful people who made donations so that Marek's dream could be fulfilled! (https://www.facebook.com/pages/Realizacja-marzenia-Marka-Du%C5%84ca/780197198678253)

The outcome of the auction marked the victory of both little Adam and big Marek, who need to fight their illness every day of their lives!

 

 

05.08

At our usual seaside hangout place called Sarbinowo Adaś had the opportunity to test an airway clearance system called The Vest, which was loaned to us for ten days by the Matio Foundation. The equipment replaces the time-consuming chest-clapping procedure, which needs to be performed after each inhallation (two to four times per day). The cost of a new unit in Poland is PLN 32,000 (EUR 7,600).

 

Adaś was a bit shy at first but quickly warmed to this technological novelty and couldn't stop laughing during the treatments: https://www.youtube.com/watch?v=5VuFdoHVocE&list=UUR-mGPvo8p2qQoQhXp7OuAg

"I'm loving my VEST!"

 

 

 

28.07

Our stay at Sarbinowo wouldn't be complete without a visit to to the fabulous Hortulus Dobrzyca gardens, which in 2013 received a nomination from National Geographic - Traveler to be voted one of the "7 New Wonders in Poland".

 

This year also brought another attraction - the gargantuan Hortulus Spectabilis LABYRYNTH (with 6 km of 2-metre-high hedges!) and a sky tower. We were in awe!

 

25.07

Next stop - the lovely, albeit rather crowded seaside resort of Sarbinowo.

 

The boys never missed an opportunity to enjoy all typical seaside treats - hot wafers with the obligatory whipped cream helped little Adam with achieving his required daily calorie intake. Choosing appropriate doses of pancreatic enzymes was far from easy, but we hope that our experience and intuition helped us give Adaś just the right amount of Creon.

 

The boys took a particular liking to a red helicopter, where they had the most curious of conversations (Krzyś: "Adaś, you keep hold of the yoke and I will attend to the emails!"), and, on a number of occasions, the helicopter even soared to the sky thanks to the PLN 2 coin which, as we explained to the boys, is very, very hard to find :-).

 

During  our cycling trips to the Gąski lighthouse or the Chłopy fishing harbour Adaś usually chose an elegant swooping position, much to the amusement of the people we met along the way.

 

 

Adaś the Almighty...

 

and Adaś the Brave.

 

20.07

Finally it's vacation time, and, with the weather truly spoiling us this year, we are happily vacationing at the Polish seaside with little Adam and his big brother Krzyś. 

 

During the first week of vacation we visited the seaside little town of Jantar, which is a bit of a tradition, as it was Krzyś's fifth time at the Farma Jantar resort and the third one for Adaś. The farm offers visitiors the opportunity to see a wide array of animals in their Mini Zoo, jump on the gargantuous trampoline and have a go-cart ride... (so far though, little Adam was happy enough just carting them around the yard!) The beautiful swimming pools were, alas, only for Krzyś to use, as we are trying to limit Adaś's exposure to potentially dangerous bacteria that might be found in lakes or pools.

 

Adaś was a devoted beach-goer and he worked diligently every day trying to clear the beach of every little stick or pebble he found, by throwing them back into the sea.... :) After a hard day's work he liked to take a well-deserved nap in the shade provided by our beach tent.

 

It was the first time that he was at the seaside at summertime without his stoma (which we got rid of in November last year), so we were very happy to see him toddling around with a perfectly smooth belly, the long scars across his tummy only adding to his 'tough-toddler' charm!

 

 

 

 

 

30.06

It's been a crisis-management week for us, as last Tuesday night, after two days of recurring acute tummy ache and vomiting, we took Adam to the hospital suspecting an onset of the distal intestinal obstruction syndrome.  A scan showed that the intestine was not, luckily, clogged up, but despite maintaning a light diet and giving Adam some medicines to ease intestinal passage, he continues to suffer from acute pain, especially at night. We hope that these symptoms will be gone soon and that Adaś will be able to continue his weight gain.

On a different note - there's some interesting news from the medical world: Vertex has announced promising results of the third-stage clinical trials of the ivacaftor and lumacaftor drug combo supposed to ease CF symptoms in patients with the double f508del mutation - see Medical News for more information. 

 

22.06

Between 12 and 21 June the Bros Company Ltd. vacationed with Daddy in the seaside town of Sarbinowo. As usual, the wide promenade which stretches along the entire town, was the perfect spot for Adaś to indulge his crazy laufrad spirit, while Krzyś did the rounds on his scooter. Daddy fulfilled Krzyś's dream of a trip in a bicycle trailer, which little Adam seemed also to be very happy about. Predictably, after beeing cooped up in the trailer for about two hours the trailer became somewhat cramped and the boys' shared enthusiasm gave way to brotherly scuffles. Luckily, by that time, the ride was nearing its end :)  

 

 

26.05

 

The Bros enjoy a typical brotherly relationship, which involves an equal measure of fighting for toys and for parents' attention and of getting breathless jumping on the trampoline together or rushing to the other one's aid in need.

Adaś follows his brother's every footstep and tries to imitate his activities. But the general rules that works both ways is that any toy that currently finds itself in the other brother's hands is the most treasured and coveted possession for the other one!

 

Krzyś gets very upset about his baby brother's heath problems. I once found him sniffling upon which he said "I'm so worried because Adaś has got such strong ilnesses...". When things get tough Krzyś even gives up his favourite fish-themed blanket and gives it to Adaś as he believes to to be the ultimate panaceum for ailments and worries of all kind. When he was assigned, as homework, to draw the situations when he is said, Krzyś drew scenes titled "When my baby brother is in hospital","When my favourite toy breaks down" and "When my baby brother is crying". he illustrated the first scene by picturing a red cross, Adaś's favourite blue blanket and soft toy, Mr Elephant (see the post from 25.11)! 

 

 

   

04.05

 

The long May weekend and a bit of good (if not always very warm) weather convinced us to focus on physical activity: Adaś has his balance bike, his scooter (now with new orange handle grips!), and the strictly passive entertainment of travelling in a bicycle seat – which, aside from the car seat, is the only place where little Adam can remain awake, immobile, and yet calm!

 

When cycling, we often choose the bumpier tracks to give Adaś the shakes and vibrations needed to help him cough out the crud from his lungs.

 

 

 

 

  

26.04

 

 

It's little Adam's second birthday today! 

We have decided to celebrate it at home because Adaś is just finishing his fourth week on antibiotics, so exposure to bugs is not on the celebration activities list!

 

Adaś loves his prezzies - a ring for his balance bike and big brother Krzyś's old scooter, which we had revamped. It's got new orange handle grips and a new orange brake for the rear wheel. The birthday boy seemed to like the cake :-) And he loved the traditional "Sto Lat" (May You Live One Hundred Years) song, as - he kept demanding "again, again"!

 

We love being able to sing the 'Hundred Years' song to him with a smile. It's something that seemed well-nigh impossible less than two years ago when we sang the song to Krzyś on his third birthday, just two days after we brought Adaś home from the hospital, and we couldn't imagine being comfortable signing it to Adaś in the years to come. He'd just been diagnosed with an incurable, life-shortening condition and his limited life-expectancy was all that we had on our minds. But one year on and two years on, the words somehow fell into place... With a CFer you can expect highs and lows - but we simply enjoy the highs and endure the lows - and celebrate every day with our beautiful little boy!

 

18.04

 

Aside from traditional chest physiotherapy (inhalations followed by chest clapping), each CFer should pursue all activities which make them fitter, increase lung capacity and cause vibrations that help them to cough out the thick mucus which accumulates in the lungs and which serves as perfect breeding ground for bacteria. With spring finally here, we often take little Adam on short cycling trips and encourage him to use the garden trampoline, which he loves especially when his big brother is jumping and hopping beside him. Adaś was also delighted to 'inherit' Krzys's baby scooter!

 

 

 

15.04

Alas - nor the antibiotics nor the stay at the seaside resort of Jelitkowo (in Gdansk) (3-10.04) helped little Adam shake off the infection and today our doctor ordered another round of antibiotics. Sadly it is one that has a particularly bitter taste which does little to help Adam regain his non-existent appetite.

 

Adam's weight is a constant concern. It has just dropped below 9.7 kg (what his big brother weighed when he was just six or seven months old) and is well below all the curves on the growth chart for his age. The specter of having to feed Adam with a G-tube through a gastrostomy (a hole in the abdomen to pump additional food to his stomach during the night) has raised its terrible head. Having lived with an ileostomy on Adam's belly for 18 months (the stoma reversal op was in November last year), we'd be very distressed to have to deprive Adas of the pleasure of long baths and the joy of a perfectly smooth belly.

 

30.03

In March we managed to visit the lovely seaside town of Sarbinowo and stay there for almost two weeks. The weather was changeable but on the whole, given that it was mid-March at the seaside, we can count ourselves reasonably lucky with the weather this time.

Unfortunately back in Warsaw it turned out that Adaś had developed a staph infection and now has to be treated with antibiotics. We hope to kick the bacteria's butt quite soon and avoid hospital treatment.

 

Little Adam has clearly entered the "Terrible Twos" phase. Each parental initiative is met with a firm "No!" followed by head-shaking that is so vigorous it looks almost like a rehearsal for the seminal Exorcist scene! 

As far verbal exchanges go, Adaś can already say a few words in addition to the several dozen baby signs that he has used over the last year to communicate with us. 

 

05.03

The film Love on the Transplant List comes highly recommended for anyone who wants to spend a magical 57 minutes witnessing the amazing story of a remarkable couple whose love is tested to the very edge of life.

 

Kirstie is 21 years old. Born with cystic fibrosis, she always knew her life would be short. 

As long as her condition allowed her, she lived an active life, and even, quite against the odds, managed to become a fitness instructor. In March 2011 she was put onto the transplant waiting list, having been told that she had end-stage lung disease and could be dead within six months.

This film follows Kirstie's extraordinary experience of living on the transplant list, the fear and uncertainty, the realities of having constant pain, taking endless medications, relying on oxygen machines 24 hours a day to breathe and doing all of this while planning for her wedding with her beloved fiancé, Stuart.

          

 

We can only hope that when little Adam grows up he will find a partner who will love him for who he is and they will fight his CF hand in hand.

UNMISSABLE:

http://www.youtube.com/watch?v=V--DNTRZAko

 

 

07.02

Dear scientists, please hurry up with developing a cure for cystic fibrosis! We support the efforts of all medical and biotech institutions which have a hand in furthering genetic research. Here, Mummy is wearing the T-shirt of a Polish research company called Genomed :)  

 

 

22.01

Both boys are ill with the hand-foot-and-mouth disease which our older, Krzyś, brought from preschool. The symptoms are much like those of chicken pox, except catching it once doesn't make you immune for life. Luckily little Adam is largely unperturbed by the tiny sores on his arms and legs!   

  

03.12

The Getaway Day! The last picture in hospital and the first one at home:

 

   

 

We were very lucky to avoid infections during our 14-day hospital stay. Given the fact that hospitalization conditions in Poland are apalling (we were "housed" in a 16 sq.m. room with three other children and three other mums) this is nothing short of a miracle for a CF toddler. Now we can enjoy the comforts of home - Mummy tried to avoid taking days off and on many days went to work after spending the night on the hospital floor.  

 

02.12

The central line was removed this morning! All that is left are two neat holes where the TPN tube was stuck in Adam's jugular (again it makes me think of horror movies - see 31.10 :-))  We can now walk about the room and generally enjoy the newly-acquired freedom. Here's what it looked like "before" and "after":

 

   

 

29.11

Today Adaś was allowed to take the first sip of water since the day before the op!

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

 

Adam is making quick progress with his sign language - we're teaching him signs so that he can communicate with us before he is able to speak. He can now make about 45 signs, some of which he learned at the hospital. He is fascinated by trams which he can hear from the outside (the room overlooks one of Warsaw's busiest tram routes) and he makes the "tram" sign whenever he sees a tram in his little book or hears one passing by.

The other picture shows him signing "Daddy". Adam has only just heard that Daddy is coming back to Warsaw after a nine-day business trip and will visit him in the hospital shortly! That means that Mummy will be spared the hardships of sleeping on the hospital floor tonight :-)

 

  

 

25.11

The recovery is apace, and more often than not, boredom sets in - all that is left to do is chew on Mr Elephant's ear!

 

  

 

22.11

A little after noon today little Adam was transferred back to the surgical ward from the post-op room.The tricky thing is he has a tangle of tubes sticking out from all parts of his body, which will be removed one by one, but the one that will stay for about ten days is a TPN catheter stuck in little Adam's jugular. It will be quite a challenge to keep such a lively toddler occupied and prevent his little hands from wrestling with that little tube!  

 

For earlier posts go to: 

http://adas-muko.pl/en/index.php?show=40