The problem with a high pain threshold

The problem with a high pain threshold is that G doesn't often realise how poorly she is. We have to second guess. Fit together the pieces of the complex puzzle.
Do your ears hurt? They Tickle.... how's your mouth? My teeth and tongue are sore.... do you feel poorly? A little bit but I don't need to go to the doctors....This is a classic trait of Turner Syndrome.

So today we've mostly been sat in the overcrowded pen that is our local walk in clinic. Standard winter behaviour in the Chapman household, (we need reservation signs for the out of hours!)
This virus has persisted, but after 7 weeks and numerous dismissals from various clinicians, G has finally got some antibiotics.  Winter ear infection count 3 - G 0. Plus a throat infection for good measure.

ENT
Finally I've initiated the re-refferal process so that we can get G a new ENT consultant. Our GP has even stated that long term care will be necessary. In the meantime the decision as to whether to keep our current appointment with our less than favoured consultant for 2 weeks time.  Watch this space!

ROLE PLAY
G is obsessed with role play... Caring for her twins and cleaning are the activities of choice at the moment.  So when we took delivery of a Little Tikes sink and stove with fully functioning tap last week, she was beside herself. Literally. The first thing she asked for upon waking the next day was to wash up.  At 6am. Maybe I'll benefit from this in 10 years time?!
She's also made sure to tell santa that this year it is vital that she gets a double buggy, double highchair and double car seat for her twins. I love watching her play. Especially when I hear my sayings creeping into her role play dialogue.

CHRISTMAS MAGIC
Christmas is magical this year for G. It's the first year thats shes been able to take it in and start to appreciate the joy of it all. The chocolate, the lights, the stories, the advent calendar. Especially the advent calendar. Having sourced a reasonably priced dairy free calendar,  I knew that she would be excited. But little did I know that our usual evening whisperings of 'love you, kiss kiss' would be replaced with 'so when I get up in the morning I can have another chocolate can't I? '
Sadly we've missed our Carols by candlelight service today, but we hope to visit a Bethlehem reinactment at our local church soon. That and an obligatory visit to Santa's workshop next week.

FEELING THANKFUL
So with the last week of term coming up, and finally getting moo on the road to winter bug recovery in time for Christmas, I can safely I'm thankful for several things right now:
The NHS, regardless of how overcrowded it's frontline service was;
(Almost) completing a term in my new school;
Having a beautiful daughter who takes all things in her stride;
And having an amazing husband who puts up with all my hysteria about G and her health.

That, and having an incredible God who looks out for us all. 

Next post, CHRISTMAS!

Have you seen the Pottersaurus?

'It was in the corner of my bedroom.'
Hmm,  imaginary friend?
.....'Mummy today with my childminder I saw a snake, and a dinosaur!' The reptile man had visited a local kids attraction. 'There was also a Pottersaurus'.
Hmm so maybe not so imaginary after all?
'What does it look like?'
'It has small ears on its head, and a tail, and is pink!'
Imaginary then!

Eye appointment
Yesterday we attended our regular 3 monthly appointment at the local opthalmology department. G's severe aversion to white coats has resulted in regular visits in an attempt to familiarise her with the surroundings.  to become familiar and happy enough to then allow them to put drops in and give her eyes a thorough close-up examination. Who are they kidding?!
Prior to the visit, we'd noticed that the white of G's eyes are not actually white. Tim Googled this.  He swiftly told me NOT to Google it. Instead we decided that it was more sensible to share this information with the actual Dr, as opposed to Dr Google.
So this, combined with the fact that the consultant has finally performed all intial eye checks to a satisfactory level (this outcome is usually achieved after 1 appointment, not 4!), has resulted in a follow up appointment in 6-8 weeks. They'll endeavour to perform this 'thorough' examination and check her eye health, with a specific focus on the sclera. Oh the anticipation of yet another delightful experience!

Gymnastics achievements
With the help from some good friends, persistant instructors, and of course Mummy & Daddy, G managed to achieve yet another badge at gymnastics. She wouldn't mind me saying that her forward roll was performed in a bit of a haphazard fashion,  but nonetheless it was a forward roll!
A professional photographer also attended the session. So despite my protest at prices, I will of course be purchasing some photographs that captured the moment beautifully. 

Local Turner Syndrome meet-up
We had a fantastic time at the Imperial War museum recently. It's one of the best lifelines having local TS families to share our experiences with. G had a fantastic day and is now obsessed with planes (except the noise of course). She's also obsessed with her 2 new besties, despite the large age gap! We can't wait to see everyone for the new year celebration.

Crazy hair
Recently I've been thinking that we need to get a hairdresser to tame G's mop, erm sorry I mean gorgeous curls. This thought was instantaneously overtaken by thoughts of G wailing at the top of her voice. Silly mummy. As if she'll even let a hairdresser through the front door!

As the shops start to pile their shelves high with Christmas goodies, and our calendar is brimming with festive gatherings, we've been been getting rather excited in our household. Apparently Santa wants water when he visits, Rudolph wants crisps and mushrooms and G wants everything. Now. Is it Christmas yet mummy?

Tea time chit chat

Over the past few weeks many people have passed comment on how busy Grace is, how she's permanently buzzing, like a duracell bunny. 
Tonight's dinner conversation gives us a little insight into her world, and how her mind is  permanently darting from one thing to another....

Why has daddy gone to a show in Birmingham today? Can we have a baby please,  two girls, actually ten babies? Why do boys have willies? I'm sorry I used so many wipes earlygo  (fav mix of earlier and a while ago!) but baby's bum was foul. It's a bit nippy out today. Why does it get dark at dinner time now?

I can't keep up with her. No one can! The 'why' phase has also well and truly hit our household. I'm embracing it though and answering as many questions as possible, and remembering my answers for when she asks again ten minutes later! 

HALF TERM HAPPINESS 

We had a superb half term together,  and spent much of it foraging for autumn goodies and then creating spectacular masterpieces. We become pros at making leaf hedgehogs. So much so that many friends and family members are displaying them on their refigerators. Thanks for indulging us :)

APPOINTMENT TIME AGAIN!

The dreaded appointment frenzy during the holiday was not quite as horrendous as I'd expected either.
Monday's community paediatric appointment was at a different hospital which meant that Grace didn't recognise our journey there and thus was not in a state upon arrival. In fact once she realised that she wasn't going to be poked or prodded, she merrily played with a dolls house whilst mummy had a nice chat. Sleep was a topical subject but we are no further as we still need to wait for the sleep clinic referral. I also discussed my concern of Grace's issue with noise. Classic lorries, motorbikes, and hand driers, but also supermarket freezers humming, helicopters in the FAR distance and other less intrusive noises. These sounds tend to cause Grace to scream, fold her ears over, try and run away, or all of the above. I was reassured (or perhaps not) that this is normal and they'd reasess next year just incase it was behavioural.

Tuesday's gastro appointment went pretty smoothly too, thanks to the installation of a wooden kitchen in the waiting room. Tears were had in the consultation room but all in all a good trip with no major concerns. We do have to start a milk trial again though. EEEEK. Baking with butter and giving Grace a crumb a day, yes you heard right - a CRUMB, will be scheduled in in the coming weeks. Such fun.
Also a regular nurses check reassured me (or perhaps not...you see a theme?) that Grace doesn't currently have an ear infection.

IN OTHER NEWS

Grace has been having lots of fun playing with friends, achieving another gymnastics badge, sending Auntie Sophie's puppy crazy, visiting mummy's new school, practising her mark making skills, celebrating uncle Bob's birthday and being crafty-in both senses of the word. Busy busy!!

Right,  back to bedtime duties. Oh and to fending off the requests for baby Annabelle and every essential accessory we see during the ad breaks of our evening installments of Fireman Sam!

When I get bigger I want to be.....

A fireman!
Fireman Sam is her hero of the moment. Firefighter Penny is pretty cool too.
Helicopter pilot is also a possible career option. Tom Thomas is amazing apparently, but fireman Sam has the edge.
Could be worse, she could want to be a pig! The Peppa obsession is officially over. Thank goodness.

2015 Turner Syndrome Conference
Wow.....for those of you who attend, or have previously, then that single word will suffice.
To be among people who are mostly strangers, but yet feel like family, and to meet people for the first time but feel like you've had a connection for years, is a fantastic feeling.
To listen to professionals who are experts in their field, and passionate about Turner Syndrome is refreshing. To see girls, young and old, who look and feel at home is heart warming.
I learnt so much. I took notes. I devised an action plan. We booked our room for next year!

So what did we actually learn?
Ear health is one of the priorities. So Mr 'I'm desperate to discharge your daughter as I don't understand the seriousness of TS and ear issues' WATCH OUT!
Blood pressure - it won't be high because they are anxious, it will most likely be high because of their TS. Getting someone to realise that it's actually important to monitor Grace's blood pressure will be a start.
Being deficient of oestrogen due to non functioning ovaries, and being dairy free means I need to get a wriggle on with calcium supplements for little G. Eventually when she receives oestrogen artificially then bone health should hopefully be less of a worry.
Anxiety is a big thing for our girls. Grace suffers already, more so than just being an average clingy toddler. The involvement of a psychologist later in childhood is a perfectly acceptable ask, if not a vital lifeline (for the counties who's services aren't cut..).
Play therapy is more than just a well-meaning member of staff waving bubbles, teddies, and Lego frantically at your child in a desperate bid to distract them during an appointment. It can be as much as weekly visits to the hospital just to play and become familiar, comfortable even with the surroundings. Cue my to do list....
I remembered to be thankful for free NHS prescriptions (our girls need a LOT of medication and injections).
I also learnt that care for Turner Syndrome varies GREATLY according to what county you live in. Country even. Also that NHS red tape and issues with medication manufacturing costs are a total arse. To hear stories of mothers who are having to battle tirelessly with GPs over the prescription of drugs that are vital to instigate puberty, regulate hormones and generally promote good health is simply heart breaking.
I could go on, but that would mean consulting my notepad as my brain is at bursting point. Parents evening, the after effects of moos ear infection, and an emotionally draining yet totally empowering  weekend are all catching up with me!

Next week.....
Hospital. Twice. Uck. Screaming in bucket loads. Half term. Hurrah. Thankful for small things. Enough said!

To share or not to share?

Sharing is such a difficult concept for toddlers to grasp. Grace really struggles. However she is a little more cunning than I had given her credit for!
During lunch today I caught her allowing Winston to lick her soup spoon. Whilst sternly explaining that this is not acceptable, I was cut short with a reply that I simply could not argue with - "Mummy, but I was sharing with Winston. You told me off for not sharing with Lara this morning.  I'm sharing now!"

Our daughters grasp of the english language is also another source of much hilarity. From the teen slang phrases to the classics that would be more likely to effortlessly float from my mother's mouth, we never quite know what she will say next. Here are some of our favourites:
● All good in the hood
● What you doing boy
● Quick sharp
● It'll be done in no time, I'm an expert
● I'm having a freak out (reserved for when she sees dogs or ducks)
● Good driving mate
● What a lovely day for a drive

Appointment update
I don't know how, but in the space of a week we've had 3 appointments come through for G. I'm sure we weren't due any until at least December! Gastro and the dietician are due in my half term, and I need to arrange ENT. Ear Nose and Throat is actually one that I am keen to attend this time round as I'm sure G is suffering from sleep apnoea. Apparently the first port of call is ENT, and sleep studies (of which we have been referred to anyway). Given our consultant's enthusiasm to discharge us, this development will be most unwelcome.

We've recently had a weekend away by the sea, which G adored. Caravans are the best thing ever, as are life-sized fluffy animal characters (so long as they are at least 1metre away). And don't get me started on her arcade obsession!   She's also developed a passion for swimming, which at one point was a phobia of hers. We will be taking full advantage of this on a weekly basis by getting her used to our local pool. Let's hope her ears play ball!

Next update-post conference!!

Conference countdown

I'm currently sat on the sofa under a blanket watching the X factor,  which only means one thing....countdown to conference!  That wasn't the 'C word' you were expecting was it?!

It also means that the summer is over and I'm back to school. G is not impressed by this. Not. One. Bit. She's refused to leave my bed of a morning and has had more outbursts than there are minutes of the day. My heart did break when she sobbed 'please don't send me there' as I packed up her bags one morning. I must reassure you that she thinks her childminder is ace, and the same day went on to inform her of what a brilliant day she'd had. Monkey! Routine is our friend. Deviation from routine is our enemy.
Good job I'm only a part timer. We've had an amazing summer, I adore time with my girl. This week I've had to earn some back-to-work brownie points with a fun filled bus ride (easily pleased!).

We've also concluded that noise really does seem to be an issue for G. She will literally jump out of her skin if she hears a motorbike, cling to me for dear life if a truck or lorry pass her by, and my goodness if I dare vacuum or dry my hands in a public toilet! As for my singing,  well,  I get a right royal telling off. 

On a serious note though, anything loud, mechanical, high pitched, unexpected, or expected yet unwanted and we are often close to meltdown. Something I'm hoping to investigate at conference. 

In other news, we are going through an appointment drought at the moment, which has multiple benefits:
-I'm yet to have to book time off from my new job for hospital visits. 
-The nightmare that is hospital car parking. It's been at least 3 weeks since we last fought for a space, and shelled out for extortionate fees.
-Grace will have time to get over the 12 hour fasting blood test, which was in itself traumatic due to a) telling her she can't have milk or toast but without telling the reason behind the cruel withholding of  her beloved morning essentials b) pinning her down so that she would stay still enough for the nurses to only to take one stab at her.

As always we've been totally blessed recently. We temporarily cancelled our place at conference but due to the generosity of some amazing people, we will be attending. Thank God.  The conference is a major lifeline for us and a source of IMMENSE knowledge.

Until next time, here is my darling,  my sweetheart (nope not my nicknames for her....hers for me!)

Wooah, I nearly forgot, G achieved her first badge at gymnastics.  WOOP WOOP! In fact that's totally worth a triple WOOP WOOP WOOP!

Have you been standing in compost?

No we haven't.  Yes we're tall, and yes we've grown.
I very much doubt Grace will ever be greeted by such comments from distant relatives. She did however leave her endocrine consultant in a state of disbelief after her measurements were taken last week. Grace has grown 5.5cm in 6 months and a whopping 12cm in the past year. To put that into context for you, an average toddler should grow 5-8cm in a year. Maybe it was the compost??

What does that mean for us? Delaying growth hormone injections for at least another 12 months. If you know how petrified G is of anything medical, you'll understand what a relief that is for us. For now.
On a less positive note,  it's time for Grace's 12-24 month blood tests. Eeeek. A medley of tests including a fasting glucose test. Try explaining no milk, no breakfast, visiting her least favourite place AND being pricked like a pin cushion to a 2 and a half year old. Can't wait.

Our 3 month opthalmology appointment was last week too, and something amazing happened - Grace didn't cry.....until the waiting room. At this rate we'll make it into the consultation room without tears by around age 5!
We made it through half of the tests before G lost interest and we've now established that she can see straight and that her eyes are working in unison (yes it really did take three eye appointments to establish that!). What it only took one appointment to discover was that 1 manky tiger toy lurking in the depths of a consultant's pencil case + a toddler who shoves everything in her mouth = horrendous diarrhea.
Next stop, testing each eye independently and the dreaded dye in the eye. Without said tiger.

As always, we are in hysterics on a regular basis due to Gracie-isms. Finger wagging, stern tellings off, and the adoption of mummy and daddy's key phrases make for some hilarious outbursts.
No mummy we don't have a deal.....stop fussing, you just keep fussing. ....be careful don't break it, it's delicate and you must be gentle....Ninnie it's ok,  don't cry, I'll look after you. .... hey you guys......I know it's not raining here but it's probably raining in our garden so I can use my new brella!

In other news we had a fantastic holiday in Norfolk, just what the Doctor ordered. Minus the rain. I think the Dr may need to prescribe a second holiday for my dad though, who did not get a minutes peace. Grace was his shadow all week. She adores her Grandan :) Squashing sandcastles with her derriere, and trying to win minion memorabilia in the arcades were the highlights of the week. Lots of fun was had by all.

Mental note, must purchase a range rover and speedboat before we return to that glorious part of the country. ..