Happy Mothers Day

Tonight S. was upset. Her dad was getting her ready to sleep while at the same time I was with her brother, after very long day.It was a long day preceded sleepless night, as S. brother wasn't well.If you ask any mum, she will tell you - sleep deprivation is the worst TORTURE. Especially when you have to get up next day, or I should say hours after your child finally fall asleep, but for various reasons you can't sleep in for longer.In my case, it's morning and have to get older sister ready for school. All you want to do is just put your head down on the pillow but you can't. Or maybe you did but it was only 3 hours and it's not enough to be your…
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New year resolutions

New year we (S.) welcomed with UTI. After 6 months break from infection she got one just before Christmas and finished antibiotics on Christmas Day. As usual urine was cleared 24 hours after, but 48 hours since last dose, urine was very cloudy and smelly. Typical. But she was in a good form. Then on the 31st of December S. woke up at 3 a.m. vomiting with fever 39C. It was bad. At 4 am I thought we gonna end up in emergency department. But in between vomits I sent an email to renal clinic, described current situation, asking them to contact me ASAP. And they did! our amazing nephrologist Dr Lewis rang me at 8 a.m. and after a short chat he decided  there is no need to bring S. to hospital and based  on…
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Pass it on.

It's 7 day until Christmas as I'm writing these words. I'm feeling festive and today I truly got into Christmas spirit today. I'm blown by kindnesses and good energy we received.  Today was a very special day for our family. S. had the honour to be princess of “OPERATION SNOWBALL". She got to cut the ribbon an open the event that was the final of a great initiative.But before she did it, she was collected from home by a limousine with a handsome chauffeur and a very special guest on the board... SANTA!!! So overwhelming! I can't find good enough words to describe the joy. Not only for S. but for all of us, S. dad, brother and myself.After receiving a gift from Santa, a photo shoot with him, listening Christmas…
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“I WANNA BE NORMAL LIKE EVERYONE ELSE”

What does normal mean? Did you ever think of it? I didn't but subconsciously I never liked this word. Rebellious as teenager - try avoid to be like everyone else - loved punk rock ;) I think is best to start off by explaining what the world believes “normal means”. I look it up the word NORMAL by Collins dictionary: “normal in American- adjective 1. conforming with or constituting an accepted standard, model, or pattern; esp., corresponding to the median or average of a large group in type, appearance, achievement, function, development, etc.; natural; usual; standard; regular. 2. Biology: occurring naturally  normal immunity (...) Medicine and Psychology a. free from disease, disorder, or malformation; specif., average in intelligence or development b. mentally sound SYNONYMY NOTE:normal implies conformity with the established norm or standard for its kind [normalintelligence]; regular implies conformity with the prescribed rule or accepted pattern for its kind [the regular working day]; typical applies to that which has the representative characteristics of its…
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Get off the couch – Mini Marathon for Cliona’s Foundation

Just before we enter the summer I took a part in VHI Womans Mini Marathon. Last time I did it was 3 years ago for http://www.cloaca.eu/marathon-for-cliona/ and with help of my wonderful girls we raised €1118!! Since then I was pregnant with S. brother and then he was a newborn so I couldn't do it. This year I decided to get my act together and take a part in the Mini Marathon again to raise some money for Cliona's. The idea of Womans Mini Marathon is to raise funds for chosen charity/ foundation and to challenge your self to get off the couch and walk, jog or run. I wont lie to you, I'm not a runner. I'm a fast walker. At least that's what I thought. I walk every day to school etc,…
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Happy 6th Birthday

I can't believe its already a year since last birthday post (http://www.cloaca.eu/huge-milestone/ ). What a busy and eventful year that was. S. started big school. She's so strong and brave. It took her 4 months to get used to her carer in school, to build a relationship and trust her to catheterize her (thank you Catherine for amazing support and helping that to happen). She took part in a school play, Goldilocks and three bears as Mama bear. I couldn't be more proud. Quiet and shy in new situations, she flourished on stage. S. gave up dance class but started tennis lessons. With school and between play dates there isn't much time for more after school activities. (http://www.cloaca.eu/social-life-5-year-old/). In school report for the end of the year I read : “S. has adapted…
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NEW CHAPTER

Things are going well. So well I'm afraid to think about it too much or talk about it out loud. On the 8Th of April we went with S.to emergency department. She wasn't very unwell, I was just concerned about urine not clearing out after a week of antibiotics and she was off food a bit. Typical UTI symptoms for us so I thought we will just go over to check it and get different meds. While we were there her temperature started to rise...I was very upset and stressed out when I found out that they would be keeping S. in.... We managed to stay out of the ward for over a year, so how is she going to take it now, when she's more mature and understands what is…
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ONE STEP FORWARD – TWO STEPS BACKWARD (separation anxiety)

Last time I wrote in here was just after S.'s cystoscopy . Then she had a UTI. Its been 3,5 months since. What was happening during that time? LOADS One step forward: After full cours of antibiotics, S. UTI cleared out and what's more important- E coli was gone. We were fighting it for a full year and couldnt get rid of it, and somehow just after one week of Keflex it was gone- for last 2,5 months. Its kind of a mystery how - as results that came showed that S. urine sample contained two different types of bacterias and each of them were resistant to oposite antibiotics. Anyway- first time -after 12 months she stayed bacteria free and dry in between catheterizations. And thats our goal at the moment (to…
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Happy, Healthy, New Year

How was your 2017? Ours was very busy. Last night I sat down and thought about last year, about S. and realised how much she has grown up, how many things happened in her life. She left playschool and started primary school, a huge change and challenge to a very bright but shy girl. Not only meeting new kids, adjusting into a new place but also OR I should say- more importantly, meeting and getting used to her SNA. (SNA = Special Needs Assistant, who looks after S.in school, making sure S. is drinking plenty of water, she check few times a day if S. is clean as she is dripping constantly, change her when she needs it, catheterize her, etc.) It took S. 4 months, but she made it.…
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Social life of 5 year old

S. is a school girl for last three months so time for update :) We are both used to new routine. 1st wake up call at 7:30 and "Mum, 5 more minutes...." ;) 2nd at 7:40, and then catheterization, dressing in uniform, breakfast, meds and run for a bus or a long walk to school, to make it for 9. Then I’m back in school for next catheterization before 12 and to collect S. at 1:30 Back at home for lunch, homework and another catheter. Between enema and bladder washout and dinner, catheter, meds and bed time she has 1.5 hours (2 if we stretch) for playing, for fun, for being a KID. Not much. So I'm doing my best to squeeze some play dates into it, so she doesn't feel left behind. So S. wont feel different than any other child. She isn't. That's…
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Huge milestone

Happy 5th birthday Five years gone since my sweet baby girl was fighting for life in the incubator and it feels like it was only yesterday. In one way, I can't believe she's so big now and will be starting big school in 3 weeks. On the other hand it feels like it's been 10 or more years, considering all that we went through. Every year, on this day I'm thinking about that day in 2012, how mad it was... In the morning I'm going to work, a few hours later I'm rushing to maternity hospital, and few more hours later she's here. A miracle baby. Because She is my miracle. S. starts big school in September. She calls it big school as a play-school was her small school :)…
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Tricks

Introduction: When emotions are high, for parents or the child, it is very helpful to have a solid idea of what works, rather than trying many many things. Procedural anxiety is anxiety around hospital procedures such as having blood taken, having a cannula inserted, going for a scan, or something like a wash out. So, with that in mind... TRICKS "At first the title of this post was meant to be "struggling with enemas". But while I was writing it and doing research I realised its not going to be about the struggle but about solutions to it. So here are some TRICKS For last few weeks we are struggling with enemas. To be exact its S. who struggle, but its all on us as parents. It got worse since an…
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Black Tuesday

Tuesday after Easter Monday we rushed into A&E - I got real scared because I couldn't insert the catheter into S. urethra. It was blocked. We spend some time in waiting room and then got to talk to reg, then there was an ultrasound and in the end ..I wont go into details - but we had a very traumatic situation that involved a paediatric surgeon who clearly forgot he deals with kids. Its scary how unprofessional his conduct was. His action has had a huge impact on our daily routine and all life in fact. Massive set back - as now S. is fighting nearly each time we have to do the catherization, trying calm her down and keep saying shes safe, we are gentle and no one will…
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OFF Prophylactic

We had a good run of 6 months on prophylactic antibiotics, without infections. Not for the first time, it ended and UTI's started. Exactly year ago i mentioned in here Asymptomatic Bacteriuria . |Asymptomatic bacteriuria is common in certain groups of people, such as those who have bladder catheters inserted for an extended period. Asymptomatic bacteriuria is not normally treated because eradicating the bacteria can be difficult and complications are usually rare. Also, giving antibiotics can alter the balance of bacteria in the body, sometimes allowing bacteria to flourish that are more difficult to eliminate." ( source: http://www.merckmanuals.com/home/kidney-and-urinary-tract-disorders/urinary-tract-infections-uti/asymptomatic-bacteriuria) First when I heard of it I didn't think its right so I just thought I misunderstood. Then I was told by nephrologist - that as long there is no symptoms- there is no…
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There are days like this…

I Hate catheterization I Hate enemas. I Hate doing it to my child. I Hate that she has to go through it and I don't blame her that she fights it and hates it. Hate. The end P.S. I do know I'm doing all them (catherizations and enemas) FOR my child not TO her... but there is days like that one, we all- parents of kids with extra care needed- feel like it. I know I'm not the only one. P.S. 2 I know its S. who struggles with all them and she have a full right to be fed up with It.... but its very stressful for me as a parent as I know regardless of all the feelings about it- we still have to do it to keep her away from hospital. (…
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DEPRIVITAZING CONDITION

While back, just before I started this blog, my worst nightmare was when someone asked me " so what exactly is wrong with S.?". And I mean after the stage when I couldn't even open my mouth to answer because I burst in tears, and after next one when I kinda wanted to answer but didn't know how, because I didn't completely understand what was happening . I'm talking about time when I knew exactly whats happening and I was ready to speak about it. (About the same time when I came up with idea for this blog ;) ). So back then I did something super stupid. Utterly stupid...namely: I started to tell all story. That S. was born with cloaca and then explaining what it actually means....to everyone.…
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Invisible Illness Awareness Week

(16-22 October 2016) All disabilities come with worry and challenges and stress and so on. Equally so for the invisible disabilities. Even though our child looks perfectly healthy, and she does! But she will have to deal with and manage a condition for the rest of her life. And we as parents take on that disability too. We have to make it part of us to help her learn to live, love and laugh with it. To overcome it. What All Parents of kids with EXTRA CHALLENGES (such as rare conditions and disabilities) Would Love to Hear Did you ever think of that? When I do it's easier to say what I hate to hear. We get to that later ;-) But I'd like to give a though to positive lines…
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Overcoming Her Diagnosis

Positive story of Chelsea Mullins. If you read my blog you know I live my life day by day and support my beloved daughter as much as I can. In busy daily routine I don't have time to think way ahead and I know there is no point worry or plan ahead. History showed that there is no point really ;) BUT when I do, I am wondering what the future hold for my baby. I'd like to share with you a story I came across a few months ago. A story that lifts up my spirit. I share it with the consent of Author - Chelsea Mullins. Her words gave me comfort and reassurance that one day S. will be happy and fulfilled woman. I believe it. Without this…
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4 years

4 years since S. arrived . I thought within a time memories would fade and trauma of that day would go away. They didn't- instead came back stronger as I'm due with S. brother in 10 days. (more…)
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33 weeks

4 years ago, at this very day - sort of - S. arrived to this world ,by emergency c- section. Sort of ,because I don't mean exact date, I'm expecting S. baby brother and right no I'm 33 weeks and 3 days pregnant. Naturally I keep coming back to the day S.arrived. (more…)
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Looking forward to summer

Today we met with Professor Mortell. He is very happy with S. As I mentioned before S. loves her playschool. We decided to send her to it only because we managed to keep her clean. Since we started doing washouts in October, we got confident about S. social cleanliness. No more broken ( very often bleeding) skin, no more sore bum , 8-12 dirty nappies in a day. Honestly, I'm still amazed. Half an hour a day for 23 hrs of shiny, sparkly guts that won't leak, catch you off guard or ruin a perfectly good bottom. OK, there is an accident here and there, we still using nappies due to urinary incontinence, but its sooooo much easier now.   S. stared school on the 4th of January. Loves it. Has friends, learning new…
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Things are going WELL

SO well I didn't wrote in a while ;) Today we meet with Nephrologist. Very happy with S. The fact that new antibiotic works well. And with catheterisation 5 times a day give great results = keep S. infections FREE. So happy with it, he want keep S. on Keflex for a while – not just for 3 months since last stay on a ward as previously decided. Keeping S. infections free is a main focus now, as her kidneys are already damaged. But at the moment we are on a good track. It is worrying to me that shes so depending on drugs but on the other hand – Id rather that than be in the hospital every other month.
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Happy Valentines

What did you do on Valentines day? I hope you spend this day and night in nice place. We did NOT . Sophie woke up with high fever and by noon she was falling off her feel, when we got to hospital she was 40C and started vomiting. UTI here we are... back. Its been so long, it felt weird to be back in emergency room. We are well use to it , the whole procedure of checking in, waiting for docs to come over, all the observations, then blood test and putting AV – OK, this part I'll never get use to it, I cry with S. I truly hate this part. Yet, its been so long, I forgot (??!!) how upsating it all is. When you know that…
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It wasn’t that long ago but…

What an emotional day Today we met Dr Sieglinde "Siggy" Mullers The Surgeon and wonderful woman who helped S. came onto this world, and saved hers and my life. 3.5years ago she cut trough me to pull this small body that didn't really look like a baby - more like a basketball with hands and feet attached to it...because S. was swollen from all the blockage. That day was a blur in my head until today. I don't think about that day too often. I have a scraps of memories. Today Dr Siggy said she remember how worried they were when they saw on the scan screen how big S's belly is and there was a risk she would stuck in birth canal. And then quick decision about c section, then…
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Bowel control program

Fecal incontinence is not psychological problem but physiological one. „Children born with anorectal malformation lack the intrinsic sensation to feel stool or gas passing through their rectum. Therefore, many times the child may unknowingly soil, become accustomed to the smell of stool, which upsets the entire family and anyone around him / her. “ (http://www.cincinnatichildrens.org/health/f/fecal-incontinence-anorectal-malformations/ ) Cloaca is one of the indicators of poor bowel control. After the main repair and after the colostomy closure it is possible to establish the functional prognosis. Signs of Poor Prognosis: constant soiling and passing of stool , No sensation (no pushing) , Urinary incontinence. So S. has all of them. How can we achieve Social Cleanliness? What to do to avoid bowel (soiling) accidents? What can be done a so child can go to playschool or school in…
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Klebsiella pneumoniae

After our “1 year away from the ward anniversary” we take S. off Augumentin. We knew its a risk. But we need it to do it. 2.5 years on antibiotics – even if its a prophylactic dose- has to leave some effects .....its obvious it can effect other organs. (more…)
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VUR

In last kidney scan We found out that S. has a kidney reflux (Vesicoureteral reflux VUR). Reflux is a disorder in which urine backs up (refluxes) from the bladder to the kidney. “In normal kidney-bladder function, urine flows from the kidneys to the bladder. In children with vesicoureteral reflux (VUR), the urine flows backwards from the bladder up toward the kidneys. As a result, children with VUR are at risk for kidney infections and may develop kidney damage “ (source : Boston Children hospital website- link in links section) (more…)
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Happy 3rd birthday :)

S. is three years old. Life is good. Can't imagine it without her. As last year and the year before I was thinking about that day when she arrived. I remember very well that day, what happened at that time and how I felt. Memories start to blur a bit but one thing I'l never forget - how scary it was. To not know for a few hours if she's alive and if she's gonna be fine, after they took her away before I could even hold her once. Every time I think of it, I can't stop the tears. Not only because of how frightening it was, but because I'I always know how precious she is. I'l always will be gratefull that she is with us. I wouldn't call myslef…
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Life changing PSARP

Few weeks back I read the news that in one of the European countries, guru of IA, inventor of PSARP – Professor Alberto Peña did a surgery on 13 year old girl. Cloaca girl with few other conditions. You might think - nothing special, this surgery is done all the time. Especialy in USA and few other countries. BUT... in Poland it was the very first PSARP surgery. First time ever. It breaks my heart to read that this girl was living for 13 years of her life without a chance of fixing what could have been done if she was living somewhere else. Today I read about boy named Guo in China, who was born with IA and he is slowly dying. He cant pass any poop so his family doesn't…
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Big anniversary.

Its a full year since our last stay in hospital. A FULL YEAR. Hard to believe it. I'm so used to the hospital life, it become a "safe zone". Do I miss it? NO. I'm delighted we managed to stay away from a ward for so long. To be exact S. had  UTI's twice more after July, but didn't need to stay on a ward. Its a small success. I wont open a bottle of champagne because its not a huge victory, life is a still struggle - trying to avoid UTI's and maintaining returning skin rash. But its a small achievement. On last check up (in April)  Professor Mortell suggest we could try take S. off the antibiotics. Since we catheterize her 5 times a day that should do the trick and keep her…
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Marathon for Cliona

Last year I took part in Women’s Mini Marathon. Naturally I had to do it again. Last year we managed to raise a nice sum of: €792.20 to support Temple Street Children’s University Hospital. (more…)
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Its not easy to be a parent.

Its not easy job to be a parent. Its even harder when you parent of a kid with congenital malformation. Parenting a child with any type of special needs changes your mind. Its like a different world. Funny enough I only realize that at times when I hear other parents complaining about their kids or how tough it is because – for example- their kid wont sleep/ eat certain food/ cry a lot/ etc – about stuff that would never cross my mind, as my worries were completely different. I worry about the whole spectrum of malformations that S's. had when she was born, about all the surgery's, the care after them, about the damaged kidneys and incontinence, about S's. future, etc, etc. Also when I'm asked a question - “how are you guys coping…
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Happy Christmas

Happy Christmas Do you remember what you were doing last year Christmas Eve? Last minute shopping, baking, cooking, last minute gift wrapping or house cleaning, or having few drinks in local pub with your friends perhaps? (more…)
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BF

BF as Brest Feeding, not Best Friend :) To began my story about BF i have to come back to day when a morfine wear off and when i realize that its 3 days gone and i still didn't hold my baby and whats worse i don't even know if shes ok. I left hospital on my own request. I had to. I was the only one in the big room without a baby. I was lying in bed and listening to girls around me, talking to their baby's, feeding them and changing, baby crying, being a witness to all this while i only seen my own baby for 5 seconds and i didn't know if shes going to make it... i couldnt do it. Not any longer. It was…
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Holiday

What do you do when you decide to go on holiday? What do you do first? Travel advisors websites suggest to set up a budget, then choose where and for how long you would like to go. Sound logic, right? But not with us :) no no no . (more…)
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Happy birthday to me

It was a very happy day for 2 reasons. 1st: sun came out for the very first time after full week of rain 2nd - and most important - I got to spend it at home with my beautiful baby girl. AT HOME, not in hospital - like in previous 2 years. (more…)
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Happy Birthday

S. Is two years old today. Yesterday we end up in hospital - again. UTI - again. E coli - again. S. was puking from the  minute she woke up. Blood+ leuco + protein in urine. (more…)
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Reality check

Last few weeks were very stresfull. First kidney and bladder scan, and DMSA test, then waiting for results, then results and burried hopes. and on the end hospital with UTI caused by E coli... (more…)
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I did it!

I survived my 10km fast walk ( 1h20'), didnt pass out ;) and I know already I definately will do it next year. What a day it was! (more…)
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Women’s Mini Marathon

I'm so happy! Couple days ago I register for Women's Mini Marathon and today I got my sponsor cards and T-shirt :) It means its happening! I'll be collecting money for our beloved Temple Street Children's University Hospital. This year they are hoping to raise 100 000 euros to buy equipment such a Anastetic Machines used to support the administration of anasthesia during theatre procedures. I hope I can help with it. (more…)
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