Author: gambit

Support system Today I got a phone call from hospital that S. procedure will be happening in 2 days. Very sudden and unexpected. To be exact it was expected last week – and we were prepared for it - but was cancelled due to cyber attack for ransom on National health system. I did not expect to be rescheduled so fast. I thought it wouldn’t happen for weeks. My first though was I have to tell S. and she won’t take it well. I told her a week before planned date and when it didn’t happen she was upset, as she was already anxious but also happy it’s not happening. Second thought was – I have to inform everyone else – S. school : teacher and principal and SNA and…

Last week S. told me she was too upset in school as one of the girls at her table was mean to her. She was making fun of her and said in the front of the whole class that S. didn’t do her homework because she goes to therapy because of her special needs. I was SHOCKED. I took a deep breath and asked how this girl knows S. goes to play therapy every Wednesday. She admitted she told the girls. I was slightly surprised but I didn’t want to carry on about that. Why? because I think it’s great she feels comfortable talking about what’s happening in her life, it looks like she is OK with it ? Even though I’m not sure she realises that not all people…

Full year of living with pandemic. Do you remember where you were and what were you doing the day the first lockdown was announced? I do. I was in the children’s hospital. Waiting for my child to come back from theatre. I panicked as I realized I don’t have any milk at home and not sure if any bread… The Taoiseach announced the schools are being closed, shops and pretty much all the country closed. All I could think of – I have enough catheters and medications for S. for next 3 months, but what’s if it’s not enough? Not long later I found out that there is shortage of syringes and other bits in pharmacies. But mostly I remember the feeling of fear – not knowing what’s ahead of us, Is…

It been a while since I post anything here. Last post was on the end of August. It’s been a busy. S. is relatively well. It is never going to be perfect and it’s OK we are happy if she is steady. Last UTI she had in march this year so it is great result. I remember times when she suffer from Urinary Tract Infections nearly every month with small breaks. So nearly a year of infections free is amazing results. I’m grateful for it. In case your child is struggling with it – what works for us, it might not work for you. I’m not a doctor, and this blog is my personal thoughts, for medical advice please talk to your doctor. What keeps S. away from UTI’s and…

It's been a while since I wrote about S. health so it’s time for an update. Just a week before her birthday we went for bladder and kidneys ultrasound (like we do every year) and the DMSA test. I wrote about it while back. It's actually funny – I couldn't remember what exactly that test is about so I looked it up on my blog to remind myself :) http://www.cloaca.eu/?s=dmsa (DMSA renal scan : a dimercaptosuccinic acid (DMSA) scan – where a child is injected with a slightly radioactive substance called DMSA that shows up on a special device called a gamma camera. This takes pictures of the child's kidneys; after the scan, the DMSA will pass harmlessly out of the child's body, in their urine.) On the last ultrasound…

Every year I post a birthday post here.  This year just as every 8th of the 8th, from the moment I woke up I thought of this day 8 years ago (S. love the fact she turned 8 on the 8/8 :D) But this year I realized something else. For the last few years I'm going over the board with preparations for the day. The deep cleaning of the house (I don't even do it so hard before Christmas – like most of my friends do), the party decorations (to impress my kids, to see that wide open mouth of S. with big silent WOW in her eyes), the big bake off like we would have an army of friends visiting us (even though its a hand full of friends this year),…

On the first of January I wrote in my diary "2020 is gonna be my year"... How naive was I? There’s half of it gone and as we all know it's definitely a year we will remember. Not for the reasons we originally planned. The virus called Covid 19 also known as coronavirus, is a new illness that can affect your lungs and airways. It started in January 2020 in China. Came over to us at the beginning of the year but first case of coronavirus was confirmed on 29 February 2020. I will never forget the lockdown was announced was announced for this country. The Taoiseach and Minister for Health issued strict guidelines for people to stay at home from midnight on 27 March 2020. “The main rule is to STAY AT…

January 2020 Bye 2019Welcome 2020 - please be nicer to me than 2019. 2019 wasn't my favourite year. Nope! Very busy "medically", very challenging logistically and mentally difficult at times. My husbands cancer treatment and battle took over,  or I might say it overshadowed all other family life. But also big news and changes in S.'s life and routine. In May, after two long years, we got to go to the urologist and as outcome of this meeting, in July she had another cystoscopy (to read about this procedure have a look at Wikipedia). This time was with attempt to remove the debris that sits in S. bladder for over 2 years. Mr Cascio was confident he can remove it. Before S. was admitted to hospital we did ultrasound and…

S. turned 7.  Like every other year – super emotional. From the moment I opened my eyes I was thinking about this very same day 7 years ago. I don't think this will ever change. Can't believe its already 7 years since she arrived in such a hurry. 7 years since I got in shock and didn't know what a life will look like tomorrow – never mind in years.  But we are here. 7 years since dramatic arrival and all the scary moments that follows... (If you are here for the very first time – you can read about it at the very start of this blog in “Our story section”). What is our life like now? Life is good. S. is an amazing young girl. Sometimes it feels like…

Marathon for Cliona's 2019Last year I took part in Woman's Mini Marathon and raised 1180€. My target was to get as much as last year (1180€) so I'm very happy. Last two months of 2018 and all 2019 until now has been a tough few months and to be honest I was highly unmotivated to do the marathon this year. Just had no energy for it. But I kept thinking about Cliona's Foundation, how much amazing work they do to support families like us. From my own experience I know how hard it is when your family member is in hospital, and how hard it is to keep it going financially. So I decided to get up and started collecting money. I kept asking everyone I know for money (including neighbours, a bus driver…