Author: gambit

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…

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…)

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…

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…)

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…

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…)

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…)

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…)

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…)

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…)