Gappy McGap

'All I want for Christmas is me two front teeth' couldn't be more apt for our G at the moment. In fact, she'd like 3 teeth!

I'm always learning, especially with regards to Turner Syndrome. What I've recently learnt  is that our girls' teeth often (not always) fall out at a younger age, and in quick succession. G has lost 3 in a matter of weeks, taking the total up to 5 now. The majority of her classmates still have a full set of their baby, pearly whites, whilst G we now affectionately call Gappy McGap! Gorgeous girl and her cheeky gappy smile.

With regards to dental health in Turner Syndrome, there has been talk of shorter roots, overcrowding of adult teeth and possible overbite. For now though, all that our G cares about is how much the tooth fairy is bringing her, and ensuring that she doesn't swallow any more teeth.

Appointment updates

No grommets yet, hurrah! Tuesday night saw yet another sleepless night for G. The anxiety of her impending Ear, Nose and Throat appointment had sent her anxiety in to overdrive. She has been having a routine hearing test every 10-16 weeks to monitor the fluid behind her ear drum, and her mild hearing loss, and this Wednesday we were back again.
Thankfully this time her hearing had improved slightly, and although she still has fluid behind her ear drum, the drum is able to vibrate enough. Enough for them not to want to give her grommets just yet.
The only real effects G is having is some regular ear pain, and struggling with hearing in busy situations. If that's the trade off for not having surgery just yet, then she's more than fine with that. We all are!

At the annual Turner Syndrome Support Society we were all directed to a fantastic leaflet outlining how hearing is affected in girls with Turner Syndrome (and how issues can differ slightly to ear problems in the general population). So I armed myself with this leaflet, and hoped that the consultant would take it, and read with interest. He took it - only because I virtually forced it upon him - but had very little interest, and implied that all the consultants know what they need to, to be able to treat G effectively...
What, really? You know the specifics of how a syndrome that often many of our consultants have only read about in a textbook or physically encountered on less than a handful of occasions, affects my daughter specifically? That girls with TS have an abnormality of how sound is processed centrally? And that this can mean that the hearing impairment can actually be greater than a simple hearing test may imply?! I know that Doctors don't, and can't know everything about everything. I'm not unreasonable, Doctors are an incredible wealth of knowledge and do an amazing job....but when a mumma is reaching out and sharing important information with you, take it. Please.

                           ~

I think we have a clear run up to Christmas now with regards to medical appointments. Well, we still have the dreaded third blood test, but I am in no rush to book that.
We do have our visit from the local specialist support services coming up, which we are eagerly anticipating. Hopefully they will have some strategies for us to implement to make life easier for G, to help to reduce her anxieties, and to help to reduce the epic meltdowns.

In other news:

G has been helping me to bake our own gluten and dairy free bread in our second-hand breadmaker. EXCITING!

G's reading is coming on fantastically - she now enjoys reading some of her old books to her brother at bedtime. It's adorable (for the 30 seconds before he decides he's had enough, she tries to pin him back down, and he swipes her, making her either lose it, or cry!).

G is due to go to the theatre with her school to see a Christmas panto. SENSORY OVERLOAD...noise, lights, lots of people, scary characters, booing and hissing. My goodness, where do we even start with this?!

Oooo and did I mention that G has now been to hairdresser 3 times in the past few months, WITHOUT  a single meltdown?! It's rather incredible. We've found a superb hairdresser who has firsthand experience of the Autistic spectrum, and of course of handling curly locks. She can comb and cut G's hair without G's sensory system going into complete meltdown. LITTLE WINS. Every little win counts <3

Sleep, school and screaming

Considering I’ve been up since 4am this morning, sleep is somewhat misleading as a title! Since returning to school, the implications on G’s sleep have been two fold-sometimes she’s totally exhausted and once she’s asleep she’s out for the count... but....the school induced anxiety/overactive brain gives rise to a buzzing babe who is often up until gone 9pm and wide awake by 4am. Throw her little brother into the mix (he  seems to have inherited G’s crazy sleep patterns) and it’s a sure fire recipe for 8am meltdowns. Right in time for the school run. Hurrah....

So I spent much of the summer holidays looking forward to the routine and stability of the new School term. Routine and stability are VITAL for G. Only what I’d forgotten to factor into the equation is her dislike of school. The epic morning meltdowns. The after school meltdowns. The going to bed each night promising myself I’d handle tomorrow’s meltdown better, make her happier, ensure she didn’t go to school thoroughly exhausted from her emotional outbursts. I then spend every journey home from said School run trying to analyse just exactly where it had all gone wrong. Again. I also try to remind myself that she can’t help it, it’s her ‘internal wiring’.   

I know it’s all change, and G can’t cope with change. The transition to year 1 is a biggie. But equally I know that this won’t be the temporary new class blues that many children experience. This is us. Every. Day. Now don’t get me wrong-she isn’t badly behaved at school, or in floods of tears all day, or sat in the corner alone and unhappy. For her is more the angst of going, and her fear of missing out  with mummy and H at home. And the  upshot to G’s emotional side-she’s incredibly loving and caring. I ADORE  that about her.  It’s just working out how to cope with the meltdowns.

So with that in mind, we’re seeking support from her new teachers along with a specialist service offered by the local council (a branch of what used to be autism outreach support) to try and bring about some positive changes in our mornings. Watch this space!

The start of this academic year was a somewhat bizzare one for me, I wasn’t preparing for a return to school myself. Two maternity leaves aside, this is the first year in ten years that I haven’t been back at school myself. Emotionally I’m far better off for it, stress wise too (my head is full to bursting most days-minutes-seconds anyway!), but I do miss it just a tad. My bank balancing is probably missing it more though.

What does the next month hold for us?

October = annual Turner Syndrome conference!! I cannot tell you how excited I am! Every year I say it-the place where acceptance, love and understanding comes in bucket loads. Where information, knowledge, and medical support is simply second to none. Every knows, everyone has ‘been there’, everyone is simply amazing. 

October also sees G return to the ophthalmologist to assess the impact of her new glasses. It also sees our bi-annual visit to the paediatrician/endocrinologist. 

Tomorrow = G’s repeat bloods. Ahhhhhhh! I feel for her, she’s terrified. Love, treats, hugs and more love on the cards for G tomorrow. 

And of course, a much needed half term for G. Yes it will bring a whole new set of challenges but equally it will be fantastic to see the element of school anxiety melt away for a few days for my girl. Where she can be where she loves to be-at home and happy. 

Boys, boys, boys

Thank you for all of your love and prayers over the past four weeks. H is Fully recovered. The operation didn’t quite go to plan but he’s none the wiser (for a fair few years at least). Daddy is also healing nicely-his disc removal was a success. He’s due at the physiotherapist this week, and the specialist in two weeks, and hopes to return to work full time in the next few weeks also. Daddy’s beyond bored, hating my driving, and missing lifting up his babes, but overall his recovery has been incredible. 

That’s us, I think! Bedtime yet?