Until this evening, when I was prompted about this blog, I have to admit that it had totally slipped my mind. For a LONG time. But I was reminded that many people have followed our beautiful girl’s story for a long time, and are keen to know how she is…
Since I last posted, G has leapt from 8 to 10 years old. DOUBLE DIGITS. She had her first MRI, attended her first ever sleepover at girl guiding camp, achieved several medals in gymnastics and passed several stages at swim school, almost completed year 5 at school, had the pleasure of being flower girl for her auntie (soon to be flower girl for her uncle) and moved house-counties actually.
Medical updates:
- Endocrinology: G has been having her routine bloods, and her most recent set showed she is negative for coeliac disease (something we’d queried for quite some time due to its prevalence in Turner Syndrome). Her IGF1 levels, which indicate the amount of growth hormone in her body, were stable if not at the high end. However her height has tailed off over the past 12-24 months, with her most recent 6 monthly check showing she’d barely grown a centimetre. As a result, her daily injection dosage has increased in the hope that we see a difference over the next 6 months.
- Growth hormone shortage: there has been a world wide shortage of G’s growth hormone Norditropin, meaning we’ve had to swap to a different growth pen. Thankfully it’s been a fairly simple transition, the only issue being that her new injection vials cannot be left out of the fridge for more than 30 minutes. Her previous pen, which she’d been on for 6 years, could stay at room temperature for up to 21 days (she had a new pen every 14 days, so that made life very easy!).
- Cardiology: G had her annual cardiac scans in November, and it was decided that they wanted a clearer picture of her heart via an MRI. She has a bicuspid aortic valve, but it was also discovered that her aorta is widening slightly. This is common in TS, but must be monitored as there is a risk of dissection, so they wanted a 3D view. G was a superstar during her MRI in January-confined spaces, loud noises and the unknown are 3 things she does not deal well with, yet she nailed it!
The results of the MRI showed what her consultant already knew, and thankfully they are happy to continue monitoring her annually. However it was discovered that she had an incidental finding on her lungs. She is having a follow-up chest x-ray next week to see if that ‘cloudy patch’ that they found has cleared up. It is likely that she had an infection around the time of her MRI, but we all want to be sure.
In other news…
G’s most recent parents evening was fantastic; we couldn’t have been prouder of our book-loving, endearing, maturing girl.
Gymnastics continues to be a passion of hers, as does reading (the local library in our new town is one of her favourite hangouts).
Gluten and wheat is making a regular appearance in her diet nowadays, with little repercussions, and she’s very much enjoying crumpets, biscuits and French stick.
We lost our beloved Winston back in March, so our family has been adjusting to life without our beloved springador. Winston used to be G’s protector when she was a babe, that and her go-to toy for pulling/grabbing/chewing and poking! In more recent years G adored spending time stoking him, and generally chilling together. He’s missed beyond measure.
Finally, we’ve been lucky enough to secure funding from a local charity to attend the Turner Syndrome conference this September! Due to Covid, the conference has been postponed for the past 3 years, so we cannot be happier to be day delegates at such an important event.
I am sure that so much more has happened since the last post in Dec 2021, but the most important fact is that G is happy, healthy and quite frankly a remarkable young girl whom we are lucky enough to be blessed with.
