How was your 2017?
Ours was very busy.
Last night I sat down and thought about last year, about S. and realised how much she has grown up, how many things happened in her life.
She left playschool and started primary school, a huge change and challenge to a very bright but shy girl. Not only meeting new kids, adjusting into a new place but also OR I should say- more importantly, meeting and getting used to her SNA. (SNA = Special Needs Assistant, who looks after S.in school, making sure S. is drinking plenty of water, she check few times a day if S. is clean as she is dripping constantly, change her when she needs it, catheterize her, etc.)
It took S. 4 months, but she made it. She opened up and started talking to C. and eventually she let C. do the catheter, without mum in the room. I didn’t think this would happen, but it did. Hard work and loads of patience from all of us, but mainly a big step for S. It was her decision, when she was ready. After many failures, when I gave up and decided to leave it- and keep going up and down to school for the catheterization… One day she just let C. do it. WOW. I was at a meeting with the psychologist and was getting advice on what else I can do, what other ways to approach this, when I got a txt message from S. SNA: ‘We did it and it went well’. The happiest day this year 😁
Then I got nervous, what if this was just the one time, but no – S. decided she is ready. It was about the same time when she started chatting to C. first with the ‘baby talk’ and more sounds than words but she did open up then, in her own time. Thank you S.! Thank you C. for being there for my baby girl and look after her like for own kid. I’m proud of my little girl. I know it wasn’t easy for her, especially after the traumatic event in the Hospital after Easter (http://www.cloaca.eu/black-tuesday/). She is the bravest person I know. I always tell her that.
What else?
In 2016 S. became a big sister, but it’s really only last year M. has grown a bit and S. had a chance to be a big sister. I’m melting each time I’m watching her playing with him, looking after him, minding him when he plays or is trying to climb the stairs. S. is a caring girl who looks after her brother and friends, kind to all.
In 2017 S. stayed in hospital only once overnight, due to a bad UTI, in February. So, it’s a big positive. Lost count of the amount of time we were there in the outpatients and renal clinics, a few times in the Emergency department, and once in the day ward. First time actually, just a week before Christmas, S. had a cystoscopy and a bladder washout under GA (Cystoscopy is a test that allows the doctor to look at the interior lining of the bladder and the urethra. GA =General anaesthetic). It was a hard experience for both of us. Poor S. was very hungry and upset as she had to fast until 3 pm, and it was hard for me to stay calm and control my emotions. But the hardest part is holding your child while she’s getting GA and looking at you, holding your hand and her eyes are rolling back but she still holds my hand…and then waiting. The last time I experienced that was 4 years ago so I kind of forgot how is it. The result of the cystoscopy: a big and hard lump of debris at the bottom of the bladder, that couldn’t be washed out. We are supposed to try do it ourselves with home washouts but had to stop it as S. become very unwell and the UTI hit hard again. S. didn’t have an UTI since July, so we got a good break, especially, that she was OFF prophylactic antibiotics since March 2017.
Don’t know what 2018 will bring, but whatever this will be – we are NOT ready 😉
We live day by day and take one step at a time.
So, whatever happens, will happen!
Nearest plan for S. – urodynamic.
Other than that, no plans.
My wish for us is strength, health, patience (and my very own wish – to sleep longer than 4 hours in row 😋).
Wishing a happy and healthy New Year to all of you.
S. mum
Dictionary:
Cystoscopy
Cystoscopy, or cystourethroscopy, is a procedure that lets a urologist view the inside of the bladder and urethra in detail.
More info at: https://www.urologyhealth.org/
A cystoscope is a thin tube with a camera and light on the end. During a cystoscopy, a doctor inserts this tube through your urethra (the tube that carries urine out of your bladder) and into your bladder so they can visualize the inside of your bladder. Magnified images from the camera are displayed on a screen where your doctor can see them.
https://www.healthline.com/hea
Picture is from : https://www.urologyhealth.or
General anesthesia:
General anesthesia means you’ll be unconscious during the cystoscopy. With general anesthesia, you may need to fast for several hours ahead of time.