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…

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 :)…

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…

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…

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…

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. (…

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.…

(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…

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…

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…)