Category: News

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…

A caregiver is anyone who provides help to another person in need, such as an ill spouse or partner, a disabled child, or an aging relative. However, family members who are actively caring for an older adult often don't self-identify as a "caregiver." Recognizing this role can help caregivers receive the support they need. It doesn’t take a psychology degree to understand that caring for someone else can involve high amounts of stress. Caring for a loved one strains even the most resilient people.  Like I said, it seems obvious that caring for a loved one is stressful, but it took me a while to recognise this. Here is my take on it and hopefully it will help you to be aware of it too. I am a full time carer…

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…

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…

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…

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…

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 https://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,…

I can't believe its already a year since last birthday post (https://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. (https://www.cloaca.eu/social-life-5-year-old/). In school report for the end of the year I read : “S. has adapted…

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…

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…