Mum and dad's diary
July 2009
28th of July – Alicja finally comes home. Even though first days and weeks are difficult (vomiting, infections, suctioning, constantly waking up at night, naso-gastric tube changing), we are happy that our little girl is finally with us.
August 2009
August is summer time and holiday time for most doctors. That gives us opportunity to get used to dealing with Alicja’s every day treatment. Even though we are tired and very worried for our daughter’s future, we enjoy this little bit of “normal” family life.
4-12th of August - grandpa’s visit – soon, through pictures, the whole family gets to know Alicja.
5th of August – Alicja’s first trip to the sea.
20th of August - Alicja receives her first hearing aids. Wearing hearing aids is a big word if we talk about a 3,5 months’ old baby who tries to move and turn to the sides and who cries because the aids are constantly whistling due to baby’s movement and to deformed shape of her ears. We try to put them as often as we can.
28th of August – Alicja turns 4 months. As we decided to do a little party for her every month, we invite a friends’ couple who bring “Alicja the Dolly” with them. It soon becomes our daughter’s very best friend :-)
September 2009
As September starts, we face the reality; very long waiting lists at hospitals and many children that need to have a priority. We learn (from other and then from our own experience) how many last minute cancellations specialized children hospitals have. We also realize how difficult it is to find good specialists for our daughter’s unusual health problems, especially that she has to be under the care of at least 10 doctors of different specialities. Having learned all of this, searching for best medical advice becomes our priority. Not having the right information seams as painful as the worry for Alicja’s health and for her future.
That’s when we decide to search for medical second opinion in Poland. We start collecting a month’s medical supply as well as letters from doctors that Alicja is fit to fly and that she has to have medical equipment on board.
22nd of September – Alicja takes a plane for the first time in her life. Surprisingly, she enjoys it! Finally, the whole family will be able to see her for real.
28th of September – Alicja happily celebrates her 5 months in her grandparents’ home.
October 2009
The visit in Poland helps us to rest and to get emotional support. We finally start feeling that we can cope with our daughter’s complex needs. Alicja is thrilled by so many people around her; she becomes more active and more aware of her surroundings. However, medical visits are for the most of them disappointing; in Poland, like in Ireland, it’s very difficult to find good specialists for something as complex as our daughter’s condition.
The medical test and visits in Poland, for most of them, don’t bring good news either. The ABR hearing test confirms what was found when Alicja was 2,5 months old: our little girl has a profound hearing loss.
Also, at a paediatric orthopaedic consultation we learn that there is probably no way of reconstructing Alicja’s deformed right leg. The consultant thinks the best way to enable our child to walk (if her other problems ever allow her to learn to walk) would be to amputate her lower leg threw the knee so she can wear a prosthesis.
On top of that doctor has another not so good news for us: Alicja’s hips are not developing properly. In the future this may make walking impossible for Alicja even more than a missing tibia. From now on, for the next 6 months, to correct her hips, Alicja needs to wear a hip splint for as long in the day and night as she can. This is quite a common problem in babies, but the hip splint adds a new element to our and Alicja’s nightmare. Our baby, who, like any other baby, needs so much freedom, has to wear a hip splint, a leg splint (for blood circulation), a naso-gastric tube and hearing aids at the same time. Also, due to the splint, which demands a constant position at the back, Alicja’s secretions get worse.
The only good news is about Alicja’s vision. We carry out a VEP test (Visually Evoked Potential) which shows, that our little girl can see with both eyes. However, the quality of her vision will remain unknown for a very long time.
During our visit in Poland, we take every opportunity to visit best private physiotherapists in our region to make sure, our baby gets best development possibilities.
We decide to start Vojta therapy for overall development and Castillo-Morales therapy for Alicja’s facial palsy and swallowing problems.
Of course, it isn’t easy to have any success in a therapy that is so far from where we live. Dad has to quickly become a specialist of difficult and stressful Vojta therapy and mum explores facial vibrational massages.
We also hope to visit our polish therapists as often as possible to check on Alicja’s progress, as well as to get new tips and exercises.
28th of October – back in Ireland, Alicja celebrates her 6 months with her parents and their friends.
November 2009
In November, days get very short and sometimes it doesn’t stop raining. This doesn’t make much difference to us though, as we wouldn’t have much time for walks anyway. Alicja’s 24 hour’s care (feeding, vomiting, suctioning, inserting naso-gastric tubes as well as normal baby care), different medical visits, searching for treatment opportunities, making appointments, doing physio, putting hearing aids and different splints on, all this fills whole our time and we feel constantly tired.
Despite all our efforts we often feel like Alicja’s treatment and development don’t progress. Most medical visits don’t provide us with any new information and the exercises done at home don’t seem helping a lot. At over 6 months Alicja starts to follow the mobile over her cot with her eyes and to cuddle her dolly, she also loves to kick with her arm and legs. However, comparing to other children of her age, who already start to sit up, it seems like her developmental delay is huge.
2nd - 9th of November – we have a series of oral feeding trials with our Speech & Language therapist. Unfortunately, they are not successful. Each drop of milk for the bottle makes Alicja coughing and crying. The therapist decides to stop the trials and the mimic of her face seems saying: “this child will never learn how to swallow”. Imagining our daughter with a feeding tube for all her life breaks our hearts.
5th of November – appointment with a well-known paediatric orthopaedic consultant who confirms what we have learned in Poland; Alicja’s leg will probably have to be amputated threw the knee, if she is able to learn walking in the future. Amputation is a possibility that seams particularly dreadful, so we start searching on internet for different options. That’s when we contact the orthopaedic clinic in Aschau (Germany).
18th of November – Alicja has a follow up heart scan after her surgery in May. While it all seems good and healed, we are going to have a more detailed heart scan in a couple of months.
25th of November – We finally start therapy in Ireland, offered us by a foundation. The physiotherapy is going to be based on Bobath therapy and the speech & language therapy sessions aiml to teach Alicja communication including basics of Lámh sign language. In future our foundation will also offer us paediatrician care, parents’ support group, swimming pool, etc.
However, the first weeks and months of the above sessions are not satisfying. Sessions are not frequent enough (roughly one hour every two weeks). Also, for some reason, Alicja starts crying as soon as we enter the foundation and she doesn’t stop until we get back to the car. She must associate that place to something very unpleasant… It takes a long time for the therapists to get to know our baby, her likes and dislikes.
December 2009
1st of December – Alicja undergoes her second surgery insertion of a grommet in her left ear.
8th of December - The results of the genetic testing come back from Holland. Alicja has CHD7 gene deformed, which is a genetic prove of Charge syndrome. Surprisingly, knowing exactly what our little girl suffers from gives us some relief.
18th of December – Alicja’s second visit to Poland.
20th of December- we visit a paediatric eye doctor who suggests that Alicja’s left eyelid ptosis should be corrected as soon as possible to improve the quality of her vision and to allow a good visual development.
23th of December - we visit another speech & language therapist who restores our hope, that Alicja can learn oral feeding. The specialist performs the first feeding trials and encourages us to continue them every day at home. This is how starts our long, every day journey that aims to enable our child to feed orally in the future.
24-26th of December – Christmas 2009. We couldn’t imagine our baby’s first Christmas without her four grandparents, her uncles and her aunts around her. We think, they couldn’t imagine Christmas without our little one either ;-) On Christmas Eve (evening that Polish people consider being the most important family evening in the whole year) Alicja is solemnly welcomed by everyone as the youngest family member. She much enjoys Christmas tree lights and other fabulous decorations, but isn’t so much interested by presents. She falls asleep as soon as mummy starts to unwrap them for her :-)
January 2010
1st of January – New Year brings new hope and new ideas. We decide to set up a web site about Alicja in Polish. We will raise awareness of CHARGE syndrome, meet other parents and collect money for the most expensive treatments.
6th of January – we visit a consultant prosthetist who confirms that, according to him, amputation of the right deformed leg and a prosthesis would be the best for Alicja. If it’s true, we are aware that, due to our daughter’s other problems : impaired vision and hearing loss as well as lack of main balance organs, Alicja will need a very good prosthesis. A good leg prosthesis may cost up to 50 000 Euro, and a child has to have it changed every 6 months. We will most definitely need to raise money for our child in the near future.
24th of January – we meet Amelia and her parents for the first time. Amelia is a little girl with CHARGE syndrome, who also lives in our city and is only 10 months older than Alicja. Amelia has similar health and developmental problems to Alicja; she is fed by a tube, has coloboma, balance problems and wears hearing aids. However, CHARGE has been a bit more gentle to her, she has two healthy legs and can hear quite well with one of her ears. Amelia is a wonderful little girl. Thanks to her mum’s hard work, she starts to make her first independent steps. She looks like Alicja’s big sister; Same asymmetric face when smiling or crying, one eye similarly closed on a sunny day, same face mimic, similar movements. It isn’t so strange, though, they both have the same gene deformed.
As of the first meeting, we became good friends with Amelia’s parents; we discuss, share information, give support to each other. Our girls are for the moment two individuals and aren’t bothered by the presence of each other, but we hope, in the future, they will become close friends.
February 2010
Step by step, we realize how much progress has Alicja made for the last couple of months. She can now sit with support or while she is holding her cot side bars for quite a long time. She can also hold her head up for a while when lying on her tummy. She became more active as well; catches her feet and rocks this way from side to side. She loves to catch the little animals on her cot mobile. Every little progress our daughter makes seems like a miracle. We start to be a little bit more hopeful, that with lots of physio and in her own time, she will be able to learn many different things.
We are worried though, that Alicja may never be able to sit unsupported due to her balance problems. Amelia's mum has a solution for that: She lends a bumbo seat from one of her friends. That’s how Amelia has learned to sit on her own (thank you, Nicola :-)
At the beginning, Alicja’s tummy muscles are very weak, while she is on her bumbo, she rocks from side to side and gets tired very quickly. However, it gets better every day and within 2 months the bumbo becomes Alicja’s favourite place to be ;-)
16th of February – We do a short course of baby massage, which is from now on our great addition to face message we do every day.
24-26th of February – We organize a three days trip to Dublin to visit Alicja’s different consultants. This includes a detailed heart examination, an assessment aiming to exchange Alicja’s naso-gastric tube to a PEG tube and a first visit to the cochlear implant clinic.
March 2010
As spring comes, we realize how much of a problem Alicja’s right eyelid is. We start looking for a good eye specialist.
7th of March – we head off for our third visit to Poland. We want to get new exercises from our private therapists and visit a few doctors. We also want Alicja to spend some time with the family (we realize that having many people around her make her more sociable, more self-confident and more aware of her surroundings).
16th of March – visit to our orthopaedic consultant who decides that Alicja’s hips have improved and, even though they are still not perfect, she can stop wearing the hip splint. What a relief! Alicja can now role and change positions in her sleep, so her sleeping routime and breathing become better.
During the four weeks spent in Poland, Alicja gets intense Vojta therapy sessions that are doing miracles for her. At the end of her stay she is able to play on her tummy, to hold her head up for a long time to roll from the tummy to the back and from the back to the tummy. She enjoys that, especially when she sees our smiley faces.
She also makes feeding progress. She can now swallow a tiny little amounts of pureed food (the proof: it appears sometimes in her naso-gastric tube) and is able to bite on foods like dried fruits.
Alicja is doing so well this time in Poland, that mum and dad are able to get away on a short break on their own, to rest and restore energy. Alicja misses them a little bit, but not too much. She loves being spoiled by her grandparents :-)
April 2010
4-5th of April – We have a very pleasant Easter time with family just before taking the plane to come back home and face new problems; an upcoming surgery of PEG tube insertion.
12th of April – Very difficult surgery of PEG tube insertion followed by a two weeks infection.
20th of April – We start Cranio therapy.
28th of April – Alicja’s first birthday party in presence of her nurses, her friend Amelia as well as of uncles and aunts (parents’ good friends). As per Polish tradition, we do an objects test. Our little girl chooses a bottle of vodka and a book. That means, she will like parting but also be intellectual… we will see in time if it’s true ;-)
We considered Alicja’s first birthday as a symbolic end of our first, very difficult year with her. We hope that, from now on life will become easier, happier and less painful for our little girl and for us.
May 2010
Summer is coming, it’s getting warm so we enjoy frequent trips to the sea. Nice weather helps Alicja to recover from her surgery a month ago. She discovers specific smell of the beach and the cold sea water on her feet and hands, she starts to touch the sand. Unfortunately, her oversensitivity to the light doesn’t allow her to freely look around. Even the lovely pink sunglasses don’t really help. Alicja constantly takes them off. She spends most of her time on the beach cuddling tightly to her mum or covering her eye with her hand.
While at home, Alicja sits better and better in her bumbo, watching the children books that we put on her bumbo tray. By the way, Alicja just loves her bumbo, she feels on it like a queen on her throne ;-) Her favourite play is to through all the toys off the tray. “Clean up time” usually ends when Alicja throws the tray itself.
24th of May - We receive a call from the cochlear implant hospital announcing that the ABR test, planned for the 26th of May, has been cancelled. The explanation is that Alicja is an “at risk” child for any anaesthetic, so they will have to look for a very good anaesthetic specialist, before they can do the test. We can not understand why we were informed so late that the appointment is cancelled. On top, the ABR is just first step of a very long assessment to insert the cochlear implants. We presume, it will take a long time for the hospital to find a good specialist. This is quite worrying, knowing that cochlear implants should be inserted before the age of two. We decide to make an appointment for the Polish cochlear implant clinic. They will send us an appointment soon for assessment at the end of June.
28th of May – Alicja’s first time at the swimming pool. While she seems a little bit intimidated by so much water, she is very curious of this “huge bath tub”.
June 2010
1st of June – The correspondence with the mum of a 2,5 years old Polish little girl with CHARGE, Julia, results in a meeting of three little girls (Alicja, Julia and Amelia) and their parents. We spend a wonderful, pleasant week all together.
Julia is not a typical “CHARGE child” example; she doesn’t have hearing and balance problems and she started walking at quite a young age. She was fed by a tube only for two first months of her life. However, she also has a slight ears malformation and coloboma. The biggest problem for Julia and her parents are her deformed hands (radial club hand). Alicja and Julia are the only two children we know with CHARGE syndrome that have deformed limbs, that’s why we really looked forward to meet Julia. Unfortunately, Julia’s story told us by her parents didn’t give us much information. To have a deformed leg is completely different than to have one or two deformed hands. While Julia has to work hard to learn how to use her hands as they are, she can still do many things with them. Alicja will need a good prosthetic support to be able to walk and amputation may be necessary.
Julia is just great! She can do almost everything with her hands. She uses them to crawl, to help herself standing up, to put her shoes on, to draw and paint. It shows us, how big the children potential is and that they can learn unbelievable things.
22nd of June - As we are still very worried for Alicja’s eyelids, we visit one of the best child ophthalmologists in Dublin. Unfortunately, the visit is very disappointing. The doctors is trying to convince us that, due to the problems Alicja had with her anaesthetic, any surgery is very dangerous for her. He isn’t able to explain, why, if it’s so dangerous, other doctors are still planning surgeries on our daughter. He doesn’t inform us either, if a surgery on either of Alicja’s eyelids could improve or protect her vision. He does not seem to understand that, considering all the problems our child has, damaging or losing her better eye would be a tragedy. We will keep searching for a specialist who will provide us with relevant information.
23rd of June – We are off to Poland for a month. We have big plans for this visit; we plan to participate in a course of day intense therapy sessions, to visit a child orthopaedic consultant in Poznan, to go for a 3 days assessment to the cochlear implant clinic in Warsaw and to take Alicja on a real holiday to the mountains.
28-30th of June – 3 days assessment at the cochlear implant clinic in Warsaw.
July 2010
1st – 14th of July – Alicja attends a Physiotherapy and Occupational therapy day clinic, where she undergoes a series of examinations and where she participats in a two weeks’ intensive Physiotherapy and Occupational therapy session.
During this time, Alicja is under the care of a neurologist, a paediatrician, a child psychologist, a pedagogue, a speech and language therapist, a deaf blind teacher, a physiotherapist, a sensor integration therapist and an audiologist.
The therapists give as new tips on how to exercise and play with Alicja, they give us new CDs with exercises and show us new games.
Sensor integration is a therapy that we haven’t even heard of before, but that both we and Alicja enjoyed a lot. This therapy has many advantages. It also help us realize for example her hands are over sensitive.
In addition, during her stay, Alicja has her usualVojta therapy sessions.
14-20th of July – Alicja goes on her first real holidays to the Sudetes Mountains with her parents and grandparents. We get a baby carrier back for her, so we can all enjoy mountain hike. That way we want to profit of the time when our daughter is still quite small and can be easily carried. She may never be able to climb a mountain on her own…
On the last day of our holidays, Alicja "climbs" the highest peak of this mountain range, Sniezka (1602m), on her daddy’s back.
21st of July – We visit a child orthopaedic consultant in Poznan to get advice on whether Alicja’s right leg could be operated.
Every visit to Poland is a kick for Alicja; surrounded by all kind of new experience and by many people who love her, she makes excellent progress; she is more active and more interested in everything around her.
29th of July – back in Ireland and only a day after she turns 15 months, Alicja really surprises us; she sits unsupported for over 20 minutes :–) From that day on, she regularly sits on her own for at least 30 minutes a day. This helps us believe that eventually, she will be able to reach milestones.
August 2010
1st of August - Alicja starts to go to the swimming pool regularly every week. She enjoys these sessions very much.
6th of August – Following the advice of our sensor integration therapist we buy a home swing. While swinging aims to largely improve Alicja’s balance, it soon becomes also one of her favourite activities; not only at home but at the physiotherapy and at the playgrounds.
14-16th of August – Weekend on an island. Alicja pays attention to so many things around her and we realize how much she has developed. We walk for long hours around the beautiful island with Alicja on daddy's and mummy's back. Colourful flowers and breathtaking landscapes relax us all a lot. Alicja enjoys playing with a sun umbrella on a beach, tasting blackberries picked from the bush and laughing at "funny" seafood on our plates.
25th of August – Alicja can now sit on her own, so she is ready to have a high chair. From today, she will sit with us at the dinner table and observe us eating. Hopefully this will give her appetite and help her to learn how to swallow and eat.
26th of August – Another bad news about our child’s treatment; we receive a letter from the cochlear implant clinic in Poland stating that, due to the possible hearing nerves damage, Alicja will probably not be suitable for cochlear implants insertion. At first, this news is devastating for us… Let’s not lose all hope, though. We are still waiting for the cochlear implant assessment in Dublin, let’s get a second opinion.
September 2010
Summer is going away and we are back to our work; the improvement of our daughter’s life.
We start realizing that all our hard work aiming to desensitize Alicja’s hands gives results. It has been 9 months now since we play with food and, we have to admit, we sometimes have good fun doing that. As soon as our girl started to sit at our dinner table, she has been given all kind of food to hold in her little hands. We dip her fingers in soups, in dressings and in mash potatoes. We “decorate” her handies with spaghetti or cabbage leaves; we stick slices of sausage or tomatoes on her fingers. Or we throw a handful of plain, cooked rise on her. Of course each of these dinner mean cleaning up all the kitchen afterwards, but we quickly realize, that Alicja not only isn’t afraid of touching food any more, but she has great fun with it and, sitting at the table, she can’t wait to see what she might get to play with this time.
We think it’s thanks to these “crazy plays” that Alicja develops a big taste for food. As we have dinner, she gets on her dummy anything she is able to swallow: dressings, ketchups, mash potatoes, tee, coffee, deserts. If we are having a soup, she even accepts some spoon feeding. The pumpkin soup is on top of her list. As she keeps her mouth constantly open to get more and more of that, we can forget for a while, that she is a tube fed child.
As we say that great news to our speech & language therapist, she decides to visit us at home together with our dietician to watch this “miracle”. They do congratulate us for Alicja’s progress and we now strongly believe our daughter will eat one day. She just needs time to grow and to get rid of all her secretions.
By the way, if Alicja can swallow, where do all these massive secretions come from? Would she have a cleft that we don’t know about? If so, that would be too much in addition to all the problems she has. We leave this question for later hoping that things will sort out themselves in time.
October 2010
4th of October – Alicja has a visual behavioural test, which shows, her vision is “not that bad”, at least in the right eye and when she looks at close objects. Of course, right eye being her better eye is a little bit terrifying, as that’s the one Alicja cannot close so may be easily damaged.
Since Alicja started to discover swinging she goes to playgrounds a lot. Unfortunately, even if there are lots of children, she doesn’t play with any of them. It’s not surprising; young children are not aware of our girl’s difference but the difficulty comes from her; she doesn’t walk, doesn’t hear and doesn’t see from far. As result, once a child wants to play with her, she gets scared, starts to cry and often falls asleep as a way of “escaping”. She is even afraid of her friend Amelia, also with CHARGE syndrome.
Being aware that making friends will be our daughter’s lifelong challenge, we decide to help her as from now. We start to go to a mother & toddler play group every week. Obviously, children of that young age usually play each of them separately. So does Alicja, but at least, we realize that every time she is less and less scared and is more and more observing other children as they are running and playing around her.
We also start to take Alicja weekly to Gymboree music sessions, where she not only enjoys being in a group of children of her age but also fallows her first “music class” where she feels (and maybe also hears) a variety of rhythms and instruments.
20th of October – we go to Dublin for an ABR test under general anesthetic as part of the cochlear implant assessment
28th of October – a Halloween party is organized by the mother & toddler play group. We go there all dressed up and in very good moods. Our little princess quickly falls asleep, terrified by many monsters and witches around, but thankfully there is a little prince who manages to wake her up (see pictures in gallery:-)
That same day, Alicja turns 18 months. Next day, we organize a little party for her at home also with Halloween theme.
November 2010
Still hesitating about making this terrifying decision about amputating our daughter’s leg and still hoping that we will find a clinic that will enable her to walk without amputation, we put a request for fabrication of first prosthesis for Alicja, that she could wear on her own deformed leg and start to learn how to stand. We get it just after two weeks and, even though Alicja is not a fan of it, she wears it from time to time (see gallery). It’s so great to see our little one who is standing on her own leg (and on the other one even if it’s not her own) and is looking from above with surprise and pride at her toys that suddenly all became so small :-)
That month we also realize how important it is to learn to communicate with our daughter by other ways than just by touch and face expression.
Firstly, we participate to a two days parents Lámh sign language training. We just learn basics during those two days but we also get book that serves us of dictionary when we want to teach Alicja how to communicate her needs, her desires and how to “name” (in sign language) different toys, people or food. For the moment, she started to understand what we want to say to her but we hope that, eventually, she will start to “talk” to us.
Additionally, Alicja starts to attend a Visually impaired preschool every week. These are one to one sessions with the teacher that she really enjoys and that (we can clearly see that) largely improve her vision, tactile and social skills.
December 2010
1stof December - another trip to Poland, to visit physiotherapists, doctors and of course, all the family.
During our summer visit at the cochlear implant clinic in Warsaw the doctors had suggested that we could do a CT scan of Alicja’s temporal bones to have a clear picture whether or not she is suitable for a cochlear implant. As result a CT scan has been arranged for Alicja for the 6th of December.
Unfortunately, that was a huge disappointment. The examination, all prearranged and discussed many times with the anaesthetic doctor didn’t go ahead. As we arrived to the day case waiting room of our city’s hospital and anaesthetic doctor came to talk to us she seemed very “surprised” by Alicja’s secretions, even though Alicja’s condition and feeding problems were clearly stated in her chart. We wondered if doctor even went through it… Once again a huge frustration about how health system works.
However, that incident shows us very clearly the difficulties that Alicja has with anaesthetic. As result, any test or surgery, even very minor, is very dangerous for our little girl. How ironic, a child who has so many different congenital defects, many of them needing a surgery, has such a big risk during anaesthetic…
24-26th of December - finally, a couple of days of rest and a peaceful family Christmas.
January 2011
11th of January – we start of a 3 month’s Hanen course for parents of children with language and learning delays.
While we go to classes, Alicja goes to a crèche organized for this particular time for children whose parents are at the course. It’s the first time our daughter is in a group of children without her mum or dad with her. Surprisingly, she enjoys that new experience and sometimes even cries when it is time to go home. Even though she plays with a crèche teacher for most of the time (we have warned them to pay attention that other children don’t accidentally damage her open eye), she also observes other kids and that helps her to be more easy going with little boys and girls of her age.
18th of January – we have an appointment at the cochlear implant clinic in Dublin and we learn that Alicja will need an MRI of her head, to determine how much of working auditory nerves she has. The test planned for the end of March.
February 2011
3rd of February - consultation with Dr. Dror Paley. A unique opportunity to repair Alicja’s leg arises.
March 2011
9th of March – we collect a special buggy for Alicja. This was assessed and bought by the COPE foundation and paid by government. We have very mixed fillings having it; from one side - it was necessary for Alicja to have a proper support for her back and neck which the special buggy offers, from the other side - Alicja is now more recognized as a handicap child. This buggy is designed for a child up to 5-6 years of age. We hope she will eventually learn how to walk and never need a bigger one.
29th of March – we go to Dublin for the MRI of Alicja’s head required by the cochlear implant team.
At the same time, we do an MRI of her right leg and an eye test.
The test was obviously carried out under general anaesthetic and Alicja’s intubation was difficult again. Same story as last year… Our little girl came from theatre all bleeding from her mouth and nose and we discovered one of her front teeth was damaged and dislocated. In the moment like that we realize how unfortunate our daughter is; life is never easy for her…
As for results of the above tests, we will have to wait a couple of weeks to have them.
April 2011
19th of April – it seems like we will never stop receiving bad news about our little girl’s condition.
After nearly two years of fighting for Alicja’s hearing we lose hope that she will ever hear anything.
That day, very hopeful, we went to Dublin to meet the cochlear implant team and discuss the results of the MRI of our daughter’s head.
While ready to discuss with doctors, which of Alicja’s ears would be more suitable to put a cochlear implant in, we were not prepared to what we’ve heard from the consultant: „The MRI of Alicja‘s head showed a very unusual condition: NO HEARING NERVES AT ALL. These are organs without which no hearing is possible, your daughter just never had and will never have this sense. A cochlear implant will not change anything, nor will the hearing aids. We cannot help your daughter; sign language will be the only way she can communicate with her surroundings. Not having hearing nerves is an extremely rare condition; Alicja is only the 5th case in my whole carrier…”
While driving back home, we couldn’t stop asking ourselves the question WHY:
WHY are we always getting mainly bad news about our daughter’s condition?
WHY is our little girl always the most special one?
WHY, already suffering from an extremely rare syndrome, Alicja has to be so original, being the only child with CHARGE that has a leg malformation and the only one that doesn’t have hearing nerves?
WHY did it seem like Alicja could hear something?
WHY was she occasionally turning to sounds?
WHY did we have useless hope for the past two years?
All these are questions without answer…
20th of April – new hope about Alicja’s hearing, even if much slimmer than previously, came the next day after the visit in Dublin.
We started to read about Auditory brain stem implants that can enable people with no hearing nerves to have some hearing. The surgery could be done in Manchester in the UK. While the brain surgery involved can be risky, going for an ABI assessment is an option we would definitely like to try.
21st of April – Alicja receives her first glasses.
28th of April – Alicja turns 2 years old. She has a nice, family barbecue party and a beautiful, teletubies birthday cake.
May 2011
1st of May – Alicja’s first visit to the zoo during which she rides a pony and really enjoys it.
6th of May – Mum participates at the first polish CHARGE conference organized by The Polish Deafblind Association from Warsaw. She meets around 30 people there, both parents and teachers.
We receive a large booklet about the syndrome, the possibilities of treatment and education but most of all we learn about the specific difficulties of deafblind people. Alicja, with no hearing and very limited vision is one of them.
12-25th of May – Alicja participates to a Physio camp in Poland and she has a wonderful experience.
Daily physio, hypotherapy (horse riding), dogs therapy, jacuzzi baths with huge bubbles, trampolines for bouncing, occupational therapy, speech and language therapy, massages, music therapy and many wonderful friends, all this make our daughter more sociable, open, playful and much more physically active.
We cannot wait for next camp.
June 2011
We decide to take profit of our stay in Poland and visit and visit a plastic surgeon with relation to Alicja’s main craniofacial problems:
The fact that the saliva and food is constantly coming out of her nose
The closed left eyelid that disturbs the development of vision in the left eye
We chose two different consultants in two different parts of Poland.
The first one advises us to lift Alicja’s eyelid and to operate her palate as soon as possible. According to her, long, floppy palate and wrong position of the uvula are disturbing Alicja’s proper swallow.
The second consultant doesn’t advise us to do anything. According to him, our daughter’s swallowing problems are purely neurological and her swallow cannot be improved by a surgery. With relation to the eye, it would be very likely, she could never close it after the procedure, which would create infections and then, serious problems with this eye.
Two consultants gave us two contradictory opinions and we feel lost. Same as with other Alicja’s defects, doctors never give us a clear answer on what would be good to do.
In consequence, we are left alone again with these difficult decisions.
July 2011
29th of July – We have a Grand Round with 4 orthopaedic consultants in Dublin. They acknowledge Dr Paley from Florida is a very experienced specialist of lower limbs reconstruction and it would be worth going to America to reconstruct Alicja’s right leg. However, they still want to wait at least 6 months to see how our little girl will develop to see if she has a chance to learn how to walk.
As parents, we trust in our daughter’s abilities to learn new things. Even if development is much delayed, our little girl can now sit, turn, swing, “walk” around the room on her back, put herself in the crawling position and can crawl a few steps. She also learns how to stand and walk with her temporary leg prosthesis during her physio sessions.
Could we get government founding for this extremely expensive surgery? The chance is still quite slim. We will have to wait and see.
OUR "MISSION IMPOSSIBLE" – GETTING THE HEARING FOR ALICJA
Text: Anna Nowicka, Photos: Radoslaw Nowicki
31st of January 2012
We arrive in Verona just before 10pm after almost 30 hours of travel. We left home at 5 am and flew to London where we had a 5 hours’ stop over to catch the evening flight to Verona. We take a taxi and we arrive to our rented apartment 30 minutes later. The landlord, a lovely, middle-aged Italian man welcomes us with a big smile and helps us to carry our entire luggage to the first floor of the building. Our studio is very nice and comfortable: beautiful décor, a queen sized bed, a baby cot for Alicja, a TV, a kitchen, a microwave and a big bathroom with a washing machine. Alicja, who loves to explore new places, looks really happy jumping on our bed and sitting in her cot. Our hearts are broken seeing her so happy… she thinks, she is on holidays…
1st of February
Although we are very tired after the trip, we have to wake up at 6am to be in the hospital before 8 am. We quickly find the office of Dr. Carner (Prof. Colletti’s assistant) and we knock on his door. Like our landlord yesterday, Dr Carner welcomes us with a big smile and we get the impression that all Italians are always so happy and relaxed. We feel very tense and worried but we smile back; we have to be brave, we have no other choice.
When we are admitted to the ENT ward, we learn that Prof. Colletti, Dr Carner and Alicja’s pediatrician Prof. Peroni will be the only people who will be able to communicate with us in English. Most nurses, secretaries and doctors only speak Italian. Knowledge of French, notions of Spanish and a good Italian phrasebook help us a lot. At the end of our stay we speak Italian without any support and without even knowing how we can do that.
We also learn the hospital’s important rule: you can never ever leave your child unattended. Whether you want to get coffee in the hospital’s canteen, go for a cigarette or go and talk to a doctor, a nurse will make a big thing of the fact that you leave your child alone for a while. They even at times knock on my door when I am in the toilet. To make things more difficult, there is no parents’ room whatsoever and it’s against hospital policy to make your drink or heat your meal in the nurses’ break room. I thank God I’m not a single mother. We have no other choice but to take turns every 24 hours in the hospital.
In the afternoon, we meet 3 other children who are going to be implanted with an ABI together with Alicja.
Amelia is 2,5 year old and came with her parents from California. She was born with multiple craniofacial abnormalities and also, like Alicja, with total absence of auditory nerves. However, the developmental difference between Alicja and Amelia is huge: this little American girl walks on her own, can see well with her glasses and perfectly communicates in sign language. Amelia already had 8 surgeries in her short life. When we talk to her parents about the procedures she already went through, we cannot believe what we hear. At around 1 year old Amelia already had her cleft lip and palate repaired as well as her nose, eyelids and forehead corrected. This is how efficient American health services are! The only thing doctors in California couldn’t do for Amelia was to give her a chance to hear. Even if ABI’s were first implanted in the US, the American FDA still doesn’t allow this procedure to be performed on children under 12 years old. That’s why doctors in the US refer their young patients to Italy to receive ABI’s. However, Amelia’s family insurance didn’t cover the surgery in Italy so they had to organize fundraising actions same as we did. You can see Amelia's web site: www.ameliaisamazing.blogspot.com.
Saifullah is a tiny, 3,5 year old boy who doesn't really look his age. He came from Canada with his parents and his big sister. He is totally deaf but also, like Alicja, he is fed by a PEG tube. As in the United States, the ABI implantation is not permitted in Canada for children under 12 years old and Saifullah's parents also had to fundraise to take him to Verona to receive his ABI.
Ted is the youngest and the healthiest of all 4 children. For these 2 reasons he is, at least in theory, more likely to benefit from the ABI implantation that the 3 other kids. He is only 16 months' old, came to Verona from Singapore with his parents and maternal grand-parents. For him as well coming to Verona is the only chance to get his hearing.
4th of February
We have been in the hospital in Verona for 4 days now. Unfortunately, Alicja got sick on the first night (fever and bronchiolitis). She has been transferred from otolaryngology to the paediatric ward. We hope that she will be well for the Auditory Brainstem Implant surgery that has been planned for this coming Tuesday, the 7th of February!
5th of February
Alicja had a CT of her head today. I was very nervous about it. I knew very well my daughter had problems with general anaesthetic. We've been trying to have a CT performed on her since she was 18 months old and all we were getting, both in Ireland and in Poland, were doctors' refusals. No one ever wanted to do a CT on Alicja, because they considered it was too dangerous due to possible anaesthetic problems. And now, here she is heading for this long awaited tomography.
To my surprise, the anaesthesiologist (who doesn't speak English but luckily speaks French) doesn't look very worried about the procedure. He explains that Alicja will get sedation through an injection which will allow her to stay still and quiet during the procedure.
For a good specialist this is as simple as that! A minute after the injection I see Alicja staring on the ceiling as if someone had hypnotized her. They take her into the examination room. When she comes back 20 minutes later, she is dizzy and weak but well.
However, when I go to thank the doctor, he looks at me with a worried face: "She has so many secretions, he says, maybe too many to safely anaesthetize her for her surgery on Tuesday..."
My heart starts beating faster but I calm down saying to myself that another anaesthetic doctor will be performing Alicja's surgery. That other doctor has already seen her and confirmed that he will perform her general anaesthetic on the surgery day. This second doctor is surely even more experienced that this one, who performed the CT. That's what I want to think...
6th of February
Alicja didn't have fever for 4 days now so the surgery in scheduled for tomorrow. Both boys were implanted today with no problems, tomorrow it will be time for our two girls. Alicja, with her head all shaved, plays happily in her cot after having her bath. Thank God she doesn’t know what she will have to go through tomorrow… 30 top surgeons from all over the world will be observing the surgery. But for us, our little girl will be of course the most important person in the theatre.
7th of February
Our experience today was so traumatic! Alicja was taken to the theatre this morning, she was intubated and then... she started to have bronco spasms... the procedure didn't take place. Thankfully, doctors managed to wake her up with no problem; she is now stable and stays at the ICU. We don't know yet whether the procedure will be repeated, as Alicja has always been difficult for anaesthetic, but if it is, we will have to wait for at least a week. Amelia from California has been implanted with no problem... Why is life always so difficult for us???
We still stay hopeful that Alicja will eventually have her surgery done...
8th of February
We have big discussions with the doctors today. Prof. Colletti offers to perform the ABI implantation surgery on Alicja next Tuesday, the 14th of February. But Prof. Peroni, Alicja's paediatrician, doesn't think it's a good idea. He suspects that Alicja’s immunity to infection is low because of the winter and it might be a better idea to perform the surgery on her in the summer. We are terrified by this idea: that would mean coming back home now and coming here again in the summer. And, after all, the problems with the anaesthetic yesterday were probably due to the amount of secretions that Alicja has... Well, she doesn't have any less in the summer...
The anaesthesiologist says that he is afraid our daughter will always react to intubation in the same way. He only speaks Italian but his face shows all his feelings: he is terrified! I understand Italian better every day and I hear him say to Dr. Carner, that he doesn't want to take a risk to intubate Alicja again...
All 4 doctors leave our room to talk it over and we feel devastated. Our little girl is alive and feels good so we should be happy. We could at this point just return home and forget about this Italian trauma. But this would mean also forgetting about Alicja's hearing. What about all our preparations, our stress, our fundraisers, our time...and, most of all, what about our lost hope...
Dr Carner comes to see us some hours later and says: "We know how much you want your child to get a chance to hear, we know how much you have already sacrificed trying to reach that goal. We will give Alicja another chance. We will perform the surgery on this coming Tuesday.”
9th of February
Alicja is treated by a team of paediatricians who investigate numerous causes that could be reasons of problems during anaesthetic. We are very worried about what is going to happen next Tuesday but there is at least some good news: Grandma is coming from Poland on Saturday!
11th of February
Alicja's grandma learned Italian during her student's years so she doesn't have any problem booking a taxi to our apartment when she arrives at Verona bus station early today. I wait for her at the apartment. She arrives with a huge bag with a taste of home inside: Polish sausages, cheese, bread and sweets. We have Polish breakfast with Italian coffee and we run to the hospital to see Alicja, who is there with her dad.
Alicja is quite surprised probably thinking "What is my granny doing here?" but she is definitely happy to see her.
13th of February
Tomorrow is our big day but in fact we really have nothing to prepare. Our parental consent to perform the surgery has been signed a week ago and doctors have been medically preparing Alicja for the whole week.
We confirm that the surgery's start time will be 8am. Doctors would prefer a much earlier time but we know that our daughter has to wake up a couple of hours before to get rid of her morning secretions.
Granny decides to stay overnight in the hospital with Alicja. She says she won't be able to sleep anyway. Our hearts are broken when we see our little girl happily playing in her cot after her bath. Are we ever going to see her so happy and full of energy again?
It's nearly midnight and I’m now ready to go to bed. I look at sleeping tablets on my night table; I'm even not going to try to sleep without them. Alarms are set for 4am.
14th of February
We had to wake Alicja up at 5.30am to give her a chance to get rid of her morning secretions. She was then taken to the theatre at 8.45am and didn’t leave the surgery room until 4.45pm. That was 8 hours of unbearable anxiety for mum, dad and grandma who were waiting in the hospital corridor as well as for family and friends waiting for news at home. The whole procedure took longer than it takes normally as Alicja is special in every way;-) But when all was finished, Prof. Colletti together with our anaesthesiologist came to talk to us with big smiles on their faces :-) They have done a very good job and the procedure went very well! Alicja was transferred then to the ICU and will stay there intubated for the whole night.
A CT scan of Alicja’s head was performed at 9pm to confirm that everything is all right after the surgery. It’s all good, thank God!
Daddy has stayed with her in the hospital while mum and grandma came home for a well-deserved sleep.
We had a very special Valentine’s Day in Verona (the romantic city of Romeo and Juliet). Our little girl has received an Auditory Brainstem Implant just on that special day :)
6.00AM
8.00PM
15th of February
Alicja is back in the paediatric ward since noon today. While very tired and in pain, she is well and has already smiled at one of her favourite toys:-) What a relief!
16th of February
Alicja is getting better after her ABI surgery on Tuesday; she sleeps a lot, doesn't cry much and smiles very often. Doctors are very surprised, that she doesn’t have any fever as most children after this procedure do. She even sat on her bumbo seat for an hour this afternoon. She is so strong and we are so happy and proud of her.
17th of February
Amelia, Ted and Saifullah leave the hospital today. This is their 11th day since they had the surgery and they all feel good, so they are ready to go home (of course they will all stay in Verona for another month). This makes us a little bit jealous as we will have to stay in hospital for at least another week. But it doesn’t really matter much: we have been through so much since we were admitted here on the 1st of February and now being in the hospital is almost like a holiday ;)
We exchange e-mail addresses and we take souvenir pictures. We also learn what the doctor’s plans are once the children leave the hospital. All 3 children go home with their heads bandaged and they will come back to the hospital every day for the next 10 days for bandage changes and antibiotic injections. The sutures are going to be removed only after these 10 days of treatment. We will probably follow the same treatment plan next week when we leave the hospital.
20th of February
At 9am, Alicja’s grandma is all packed for her return trip to Poland so she still has time to come to the hospital and say goodbye to her granddaughter. Seeing them cuddling for the last time in Verona makes us a bit sad; it’s always difficult to say goodbye to your loved ones, but we also feel relieved.
When my mum was coming from Poland 10 days ago, she didn’t know what to expect here. The surgery might not have been successful… Thank goodness that everything went well and that our little girl is recovering and getting stronger every day…
21st of February
We have a bandage change today and we feel grateful for that as Alicja often tries to scratch her head and cries at the same time.
We both are holding her hand and head while two nurses unwrap her old, dirty bandage and put on a new dressing. According to Dr Carner, Alicja’s wound looks perfect, but we wouldn’t say so. It looks scary, awful. However, the parents of the other 3 children, who also came to have their dressings changed today, say to us, that their wounds also looked very bad last week. Now, they’ve healed a lot and look much better.
Well, we really hope it will improve. Just have a look at the video below
23rd of February
We recently heard that a person should not have more than 3 CT scans in their whole life, as it carries so much radiation. Our little girl had 3 CT’s of her head in one month.
Luckily, today’s tomography showed again that everything is ok and that the ABI surgery didn’t damage Alicja’s brain!
We are looking forward to Prof. Colletti’s visit tomorrow morning. Hopefully he will confirm that we can go home. We have already started to pack our stuff:-)
24th of February
Alicja left the hospital this afternoon and went "home". However, she still has her head all bandaged, the wound is very itchy and she scratches all the time. That is frustrating both for her and for us. We can't wait for her bandage to be removed so we can bath her properly. It doesn’t seem like this is going to happen any soon though.
Like the 3 other children, we will return to hospital every day for injections and bandage changes for another 7-10 days.
25th of February
We could finally take Alicja for a walk (she hasn't been out since we came to Verona). Spring has already come and the weather is beautiful:-)
28th of February
We met Amelia and her parents for dinner tonight in a lovely, German styled beer garden. At 9.01pm, we drank to Alicja’s health as we do every month. She is 2 years and 10 months’ old now. The last month of our daughter’s life has been so special. It has been extremely difficult but we have won a very important battle. We have achieved a huge part of our mission.
1st of March
Today, after our visit to the hospital, we took a city bus to visit Verona’s city center. Alicja, with her very limited vision and still no hearing, with probably no smell and very reduced mobility, visits new places in a totally different way than other children of her age do. But she definitely learns new things in every new place she visits.
She touches and contemplates every detail of a column in one of Verona’s churches, she looks (from very close) at the sculptures in a museum, she loves the old styled books that are full of pictures from different “Romeo and Juliet” staging performances and movies in “Juliet’s House”.
In the afternoon, we have dinner in a traditional, stylish, Veronese restaurant and Alicja has always loved going out for food (even if the doesn’t eat herself). She looks so happy sitting in a high chair, interestingly watching colorful dishes, dipping her fingers in them as well as tasting sauces and creams.
We had a lovely and relaxing day, a real holiday.
2nd of March
We didn’t really have a chance to sleep tonight. Alicja woke up at 2am and couldn’t stop crying. This made us very anxious. After brain surgery, there may be many side effects including internal bleeding, serious infections and meningitis. Luckily Alicja didn’t have fever. We gave her paracetamol anyway to calm her down a little bit but she was still nervous, crying and scratching continuously so we couldn’t go back to sleep.
As early as 8 am, we were already knocking on Dr Carner’s door. He looked scared when we briefly described the situation from last night. He quickly called two nurses who removed the bandage from Alicja’s head. The wound looked fine; however, we found a big, red and inflamed bald spot at the back of her head. Is it possible that the bandage pressure caused hair-loss and skin ischemia? This inflamed and raw wound was the reason why Alicja couldn’t sleep for the whole night. Dr Carner put some antibiotic cream on the spot and, with our agreement, recovered Alicja’s head with a much lighter bandage. What a relief!
We came back home for a well-deserved siesta and all together fell into deep sleep.
5th of March
We went to a follow up visit to the hospital today and, surprise, Alicja's stitches have finally been removed (we expected to wait at least another week for that:-) As for the implant activation date, we don't know it just yet. At the moment we wait for the doctor's decision to permanently remove Alicja's bandage, maybe by the end of the week... we're sure she will be delighted about that.
7th of March
All four ABI children and their families meet up for lunch today. We choose a lovely pizzeria not far from the hospital that we think serves the best tiramisu in the whole city of Verona.
We talk, laugh, take pictures, exchange addresses and phone numbers and we promise each other to stay in touch. We have been a great team even though we came from 3 different continents. The recent, painful experience that we had in common created a deep relationship between us.
8th of March
At 8 am, we all meet in front of Prof. Colletti’s office and we wait for a decision as to whether the bandages will be removed. Unfortunately, the Professor decides to keep the dressings on until Monday just in case, even if the wound is healing well. We are all disappointed; we think the wounds should breathe and that nothing bad would happen to them it they were left unwrapped at this stage.
However, the Professor has also good news for us; Alicja’s implant will most probably be activated on this coming Monday together with the other children’s implants:-) But we will only know that for sure on Monday morning.
At home, we realize that Alicja has a big bald spot on the top of her head. We look under the bandage and see an even bigger spot that is covered by the dressing. All these bald spots are completely deprived of hair roots. We start panicking; Alicja had always had such lovely, thick hair. We’ve always been proud of it. What if it never grew back again? We looked on the Internet and we learned that hair-loss can be caused by a very tight head cover and that it can be irreversible… We decide to remove the bandage from Alicja’s head. We make our own dressing using lint and sticking plasters and cover only the wound area with it. We clean Alicja’s head with a wet towel. We know she is happy about that because she starts laughing:-)
Today is Women’s Day (a popular holiday in Poland as well as in Italy). We buy some little flowers for our brave little lady:-)
09-11th of March
This is our first weekend without hospital appointments since we arrived in Verona on the 31st of January and we would really like to have a weekend getaway. Leaving Verona for two days would really help us to relax instead of staying at home and constantly thinking about implant activation next week. Additionally, my wonderful Human Resources Director contacts me to offer us a present from my company, Starwood Hotels and Resorts; a 2-night’s stay in one of our hotels in Venice with meals included. That’s wonderful! We head of to Venice tomorrow morning:-)
When we get off the train at Venice’s Santa Lucia train station, we start to regret that we don’t have Alicja’s toddler slings with us. The big number of hump back bridges with stairs can hinder any parent of a young child in a buggy but also makes many places in the city unreachable to people in wheelchairs. We would probably manage with Alicja in her buggy but we also have a big suitcase with us with her special milk and medical equipment in it. We decide to take a Vaporetto (water bus) and we quickly reach our hotel. This way Alicja gets to know another not so common mode of transport:-)
Once already in the hotel, I recall that our neighbors from Poland have relatives who live in Venice. I make a call to Poland and get the number to Agnieszka, who has been living in Venice for 8 years and is married to Kuba, who has been living in Venice since he was a child. I call Agnieszka and we arrange to meet.
We spent a lovely afternoon with this Polish couple and their little boy (great play mate for Alicja) at their apartment in the beautiful Venetian Jewish quarter. We learn that Kuba is the only gondolier not born in Italy (that profession is usually inherited from father to son). He offers to take us for a ride in his gondola, telling us many interesting stories about the city. The three of us enjoy this free ride a lot. Too bad that Alicja cannot hear yet.
Kuba was born in Poland but has lived in Venice for most of his life. He is fluent in Polish, Italian and French (he also speaks English). He is already known in the French “Routard” travel guide about Venice (the 2012 edition page 70) and in Polish travel websites as he is the only gondolier fluently speaking these two languages. If anyone is interested in his service, these are his details: You can book a gondola ride with him by phone (+39 333 422 06 31) or by e-mail (kubakuba@libero.it). You can also just find him every day at the Cannaregio quarter’s canals (the vaporetto stop is called Campo del Ghetto Nuovo).
When we arrive back to Verona from our wonderful trip to Venice on Sunday evening, we just dream about quickly going to sleep (Alicja has actually fallen asleep already in the train). Well, we need to have a good night’s sleep as it will be a difficult day in the hospital tomorrow…
12th of March
Today, the 12th of March 2012, was a very long and difficult day but it was also a very special and emotional one. We came to the Verona University Hospital at 8am for a very important test: EABR under general anesthetic. This test aimed to measure Alicja’s brain responses to the sounds that the new device in her head is going to offer her. We didn’t leave the hospital until 1.30pm but it was worth waiting. Doctors were amazed as they didn’t expect such a great result:-) All 12 electrodes seem to work for Alicja! That result made us so happy:-)
We went home for a quick lunch and returned to the hospital at 4pm. And then… at 5.01 pm Alicja heard for the first time in her life!
The first words she heard were the voices of her mom and dad:-) We had joked before that the first words Alicja will hear in her life will be from doctors speaking to her in Italian, but it didn’t happen that way. An audiologist just said “Ok, she can hear now, you can talk to her”. We were not really prepared and didn’t know what to say at first;-)
According to doctors and audiologists, Alicja’s reaction to the sounds was very good and gave us good prognosis for her hearing development.
From now on, we will celebrate the 12th of March as Alicja’s hearing birthday.
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