Wednesday 1 March 2017

Our miracle is soon to be 4!

Today I was told that the endocrine nurse had provisionally pencilled us in for growth hormone injection training on G's birthday. ON her birthday. There is no way I am ruining the one day that she has been excitedly counting down to, by subjecting her to her first ever GH injection!

So we are awaiting a new training date. To be fair, had you caught me at the back end of last Friday, I'd probably have been telling you that I'd like to stick the injections where the sun don't shine (sorry)! After the GP and ourselves received a letter from the visiting endocrine consultant last Friday, several hours of phone calls to various medical people then ensued. By 5pm, I was exhausted, frustrated and in desperate need of wine. We were being prescribed a type of pen which had the needle SHOWING, and everyone's lack of knowledge of growth hormone (and need to seek advice from medical texts and Dr Google) had left me less than confident in the whole process.
Thankfully after a little too much chocolate, messages from numerous Turner Syndrome specialists - AKA Turner Syndrome mummies - I was back on top.

Fast forward to today and I'm actually surprised that we are almost ready to rock 'n' roll... the pharmacy should now be in receipt of said growth hormone, and a specialist nurse from the pharmaceutical company is due to contact me asap to reschedule a training appointment,.
The injector pen, which is disposable and will last for 7 daily doses (and comes at a cost of £#*# per week - as I was explicitly told by our GP surgery) will have an uncovered needle, but we are sourcing a special penmate to cover it.

We were kindly sent a football-related height chart from a fabulous TS family, so now all that's left to do is buy a reward chart, mountains of stickers, and G's bodyweight in dairy free chocolate buttons. That and mentally prepare myself for what we have always known to be inevitable. I'm not sure how well my pregnancy hormones will behave during the injection training, or first few weeks of daily injections. Maybe I'll need a reward chart and stickers too?!

DID YOU KNOW?
Growth hormone can increase a girl's final height by up to 2/3 inches- final adult height without GH averages at around 4 foot 8 inches.
It is given daily via an injection, until the bones fuse together and final adult height is reached.

In other news....

-G was an absolute super star at her eye appointment, despite a mere two days of preparation. Surprisingly one Starbucks babycino combined with ZERO minutes waiting time due to the appointment being on time (!) and the promise of returning to her pre-school buddies by breaktime, resulted in the best appointment to date. Perfect vision. One less thing to worry about.

- Anxiety is creeping it's way in to G's everyday little life. Worries about starting school are still rife, concerns regarding mummy/baby are common, and regular activities such as swimming and football are even causing some angst. A friend suggested that as change is afoot with baby number two arriving in the summer, G could be getting a little unsettled. True enough, despite G's abundance of adoration for her new sibling. I also know that Turner Syndrome and anxiety go hand in hand, so this is a factor that we must allow for.

- I am giving up facebook for lent again. Face to face time is at the top of the agenda, especially given that little G is far too often mimicking our love of spending time on hand-held devices. Blog updates will be posted but forgive me,  I am not ignoring any comments or love. I'll reply in 40 days, or thereabouts!

All that is left  now is final preparations for G's upcoming birthday....A trip to the zoo, lots of cake, a picnic, a birthday party and lots of love for our gorgeous girl are all scheduled in for the coming week.

HAPPY FOURTH BIRTHDAY G - YOU ARE OUR WOLRD AND WE ADORE YOU <3
- Disclaimer: I'm not bashing medical professionals in any way, lack of knowledge is just a fact of life due to the rarity  of TS. It can be tough as us parents often have to become the professionals, but thankfully there are many amazing experts around (the TSSS uk being one of them). As for NHS and treatment being free at the point of delivery, AMAZING. I don't actually know how we would afford G's daily hormone injections without it. We love you NHS!