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…
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.
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…
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…
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…
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…)
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…)
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…
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…