Wednesday 30 October 2019

Who knew?

We're always learning, and I LOVE that about life. Every day really is a school day! So today's post is dedicated to things that I have learnt since my last blog, including some amazing things from our time at the annual Turner Syndrome conference earlier this month.

My most recent revelation came towards the end of  24 hour stint in hospital for G.
WHO KNEW THAT TONSIL INFLAMMATION COULD PRESENT AS SIMILAR SYMPTOMS TO APPENDICITIS?! After being in such severe pain that at times she was unable to walk, the urgent care Dr sent us straight to A&E with suspected appendicitis. That accompanied with a fever, nausea and pain in a very specific location, appendicitis seemed the most logical option.
Only it wasn't.
Inflamed tonsils (which did not hurt G one iota) was suggested as the root cause, and that was that. We returned home earlier today :)

WHO KNEW THAT G WOULD MAKE IT ALL THE WAY TO SIX AND A HALF YEARS OLD WITHOUT AN OVERNIGHT HOSPITAL ADMISSION?! The amount of times we frequented the urgent care centre, and the pediatric assessment unit, it's a wonder how we haven't been admitted before. That  said I'm awfully glad we hadn't...The screaming which accompanied the insertion and removal of the cannula was quite something, and the bed I slept on pulled down out of a cupboard.  I spent the entire night waiting to be catapulted back in-comedy style!

WHO KNEW THAT IN HER REVIEW WITH THE SCHOOL FAMILY SUPPORT WORKER, G WOULD TALK OF HER LOVE OF SCHOOL AND REEL OFF A LIST OF FRIENDS?! Don't get me wrong, from our perspective it can still be really tricky getting her to school. But this half term really hasn't been that bad at all (with a fantastic parents evening too). Well done G <3

WHO KNEW THAT THE PREVALENCE OF A BICUSPID AORTA VALVE IS AROUND 1 IN 300 OF THE GENERAL POPULATION, YET IT IS AROUND 30% IN TURNER SYNDROME?! We had an incredibly informative talk from Professor Bernard Keavney at the conference this year. G's biuspid aortic valve is currently monitored on a yearly basis, and currently presents no concerns. However, due to the potential risk it could pose, we have picked up some more medic style cards which the Turner Syndrome Support Society kindly produce free of charge. These can then be handed to an emergency services worker in the event that G should present with chest pains or shortness of breath.

WHO KNEW THAT LITTLE G WOULD PERFORM THE WHOLE OF THE JUNIOR DANCE IN THE SATURDAY NIGHT SHOW AT CONFERENCE?! Every year we have willed her on on, we've cheered, we've supported, but the anxiety has been too overwhelming for her. This year she did it! I could have cried (I think I did!). We were so proud of our beautiful little miracle.

WHO KNEW THAT FAILING AT SOMETHING COULD ACTUALLY NOT BE FAILURE AT ALL?! This one's for me (and probably lots of you too).....I failed at something that I considered quite BIG last week, a teaching job interview. Only I realised that I didn't fail, it just wasn't right for me. I knew it wasn't right, I had an instinct, but I needed to check. So actually I succeeded in getting one step closer to knowing what does and doesn't work for me, my health and my family.

In other news:

- Our recent Ear, Nose and Throat appointment was a time of great anxiety for G. Generally, at each appointment she has a hearing test and then we find out whether grommets are imminent. Thankfully, yet again we have been told that she is safe for another 6 months.

-As always, the Turner Syndrome conference was a pure delight. The wisdom, the education, the support, the squeals of delight from the girls who have been counting down to seeing their besties, the Saturday night show - no words <3
Honestly if the love and support that is given/shared/shown by the TS family had a red aura around it, then the conference venue would have been visible from space!

- We have a film night on Friday, G literally cannot wait. She now loves a good film, I mean she'll generally watch the same film twenty billionty times, but we can't complain. I'm opting for Beauty and the Beast, not sure if that's top of Daddy's list though...