A whopping 7cm!

We knew that G had grown - her aged 3 school trousers had suddenly become ankle swingers, and her smallest size school T-shirts were quickly morphing into cropped tops, but we didn't quite realise just HOW much she'd grown.

So when we attended G's endocrine appointment several weeks ago, we were astounded to find out that not only had she grown nearly 7cm in 7 months, but she had jumped a centile on the growth charts too. To put that in to context - G had a period of 16 months (or thereabout) where she only grew around 8cm. This infact was the period of slow growth that triggered the start of her growth hormone injection. 

HOW AMAZING.

We are so lucky that G can receive this treatment. Sure she still has a grumble about her daily injection, and the breakthrough of not needing a numbing ice cube was only short lived, but she is still a trooper. She's more than that...SHE'S AMAZING.

A difficult topic of conversation

One aspect of Turner Syndrome that I am still to get my head around, is the lack of functioning ovaries, which sadly for most means not being able to create and carry a biological child. This is still a subject that G has little to no understanding of, and is something that we want to drip feed to her sooner rather than later. I'm currently researching stories and books to give rise to such discussions.

Last year I was lucky enough to partake in a textiles project which aimed to give a voice to mothers of girls with Turner Syndrome, and specifically voice our views on infertility. What a fantastic day, and what a beautiful project. The quilt that was produced was a masterpiece. It spoke a thousand words. I can't wait to write a blog about this. Watch this space.  

Conference

I can't believe that I haven't blogged about the TSSS 2017 conference! What an incredible, informative, heart-warming weekend it was. From the uplifting performances at the Saturday night Ball, to the mum's heart-to-heart where we could pour out our deepest thoughts and worries. Lay our souls bare. And every one in the room knows exactly how you feel. Every. Single. One. 

G didn't cope quite so well with the weekend. Over-excited, over-tired, over-stimulated and totally out-of-routine was our girl. It was melt-down central. (Gosh it's hyphen central too!). That said, it was worth it. She had a ball. And what we get out of it, as a family, is well worth the  tears and tantrums! Plus some of my favourite people were at conference. Miss you already xx

A HUGE thank you goes out to Arlene, Carlene, everyone at the society and the guest speakers. I learn more in one weekend than I do throughout the rest of the year or from any other health professional. 

Appointments

Ears and eyes - check. Back in six months time.

Endocrine - check. Back in six months. Although a referral to a large children's hospital, who offer a dedicated Turner Syndrome clinic, is hopefully on the cards. Daily growth hormone increased slightly. 

No appointments before Christmas now - CHECK!

School

This year was the first time that I viewed the count down to half term in a totally different light. Normally, as a teacher I am willing the next holiday to make an appearance quick sharp. HECK we teachers have an actual countdown, usually in our diaries, and from the first day of term!
Whereas come October I was secretly hoping to skip half term. G needs routine, loves school, and without either she could potentially have been a handful... That said, G was in desperate need of a break. As of September, her immune system seemed to take a leave of absence, so a week at home was necessary for medicinal purposes.

In actual fact I LOVED my week with my biggest babe. I hadn't realised just how much I had missed her since she started school. We had lots of fun, baked cakes, played in the park, and shared cugs and kisses with baby H. 

G has settled in to school really well, and loves sharing her daily learning with us. The school have been incredibly supportive of any needs that arise due to  her Turner Syndrome. 

A report from the occupational therapist regarding some of her struggles (fine motor skills, concentration, sensory processing disorder), along with their own observations and our input have resulted in G receiving the support that she needs. We were also pleased to learn that school share similar views to us with respect to G displaying traits of Attention Deficit Hyperactivity Disorder (ADHD). She definitely ticks the boxes for the three main aspects - hyperactive, impulsive and inattentive. As this can fall under the umbrella of Turner Syndrome, no EXTRA diagnosis is needed, and again the school are putting measures in place to aid G. Granted, not much support is required yet, but they are willing to do the leg work as and when it is needed.
Happy G, happy mummy and daddy!
Mental note for mummy-stop it with the 'sit still and concentrate'... 

In other news...

I'm sure I had other news?! My brain doesn't work any more! I'll update this section as and when some of my brain cells start to function again.... I did eat a mince pie, tune my DAB radio to Xmas Magic, and watch some Christmas adverts today. Bet you wanted to know that important info didn't you!

LOVE YOU FOREVER AND ALWAYS LITTLE G

Our first mother-daughter Turner Syndrome 'chat'

Last Thursday on our way to the hospital G asked me a question that I'd been anticipating.  Why do I go to the hospital lots?
Knowing we wanted to be as open with her as possible from a young age, I decided to seize the opportunity....

Because you have Turner Syndrome sweetie.
Does Hats have Turner Syndome mummy?
No G she doesn't.
Well you and daddy do don't you?
Actually we don't darling.
Oh. Well who does then?
(Thankfully we'd recently attended a local TS meet up)
Well do you remember when we went to the restaurant on Sunday for a Turner Syndrome lunch?
Yes mummy...
Well R who you did the picture for has it. So does HM who you also did the picture for. And I and G who sat opposite you at the table, and also S.
Oh. They have Turner Syndrome like me?
Yes sweetheart.
Can I have chocolate after hospital??

Bingo. Although the word Turner Syndrome is not alien to her- she has a teddy bear called Turner,  a TS hoodie and we've attended 2 local meet ups with her- we'd never actually told her she has Turner Syndrome.

She won't fully appreciate and understand the full effects of TS for many years to come, but another fact that I know we will need to slowly drip feed is the fact that nearly all girls with TS are infertile.
G is obsessed with babies at the moment-to the point at which she is begging us to have another one, and is frequently shoving babies, pillows and cushions up her top. That breaks my heart. For her.
That said, we will also make it clear that you don't always need to be a tummy mummy to be a mummy. Thank goodness for fertility treatments, adoption and whatever advances in technology will occur in the next 20 years.

Those of you wondering whether the hospital appointment in question was THE appointment......the much anticipated referral to a new ear, nose and throat consultant. It was. And what a shambles. I'm still so incredibly angry, furious infact, that I'm not going to discuss it today.

To end on a lighter (and slightly grottier) note, this occurred yesterday. It caused my sister much hilarity and disgust, in equal measures...
I've got a bogey in my mouth!
What?!
(G proudly presented her tongue with a rather large green friend balanced precariously on the tip)
That's gross you don't eat bogeys, you only eat food! Does it taste horrible?
No its yummy.
Surely not...
No actually it's yummy scrummy!

And I'll leave you on that note!