Has Father Santa Clause been?

G has been bursting with the joy of Christmas this December. That is on the days when she hasn't been ill...hmm...  G has been ill this December!

We've frequented the out of hours, our local surgery, and the walk in centre due to numerous infections. Throat and ears, but ears mainly.
To combat the ongoing problem G was upgraded from banana medicine to some horrendous tasting, vomit inducing antibiotics which ended up doing more harm than good. So four days before Christmas on the advice of the Doctor, we went cold turkey.
She is still riddled with cold, but her ears appear to have relented for now.

Christmas
We had a fantastic Christmas day. Love, family, food, sharing, giving, happiness. Though tantrums were two a penny. But I guess for a toddler who is a stickler for routine,  and has a tummy as delicate as a flower, she was bound to go a little crazy with the food and gift frenzy! Routine was restored at bedtime,  and she slept like a log (almost) for the first time in weeks.
Aswell as G receiving some lovely gifts, I received a truly thoughtful gift this year. My amazing husband combined my love of writing this blog, and my dream of becoming an author to create my very own hardback copy of Short 'n' Sweet, volume 1. Seeing G's story in print, hundreds of pages of print, reminded me of what an inspirational little girl we have. A beautiful God-given child who has defied the odds.

The A word
Four appointments in the forthcoming weeks. Ears-old consultant, eyes, more in-depth eyes, and ears-new consultant. Four appointments that involve physical contact. Habitual utterings of  'Don't worry they're just talking to mummy about you, they won't touch you' will be null and void!

So for us now,  back to thank you cards and playing hairdressers/babies and mummies/Fireman Sam, just like any other 2 year old. Only, one that's missing a tiny little chromosome.

Wishing you all love and peace for 2016

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. ..

Naughty and nice!

'Thank you for spritzing my hair mummy, it's very lovely'.....'you're welcome mummy'.....'your new work boots look amazing daddy, I love them'........
'AGGHHHHHH, NO OOOO! ' (Kick scream, bite, kick, push, bite) ...
It's safe to say we very much have a Jekyl and Hyde on our hands at the moment. One moment sweet as pie, the next a raging tornado who takes down everything in her path!
Still, the incredibly polite babe who showers us with kisses definately more than makes up for the tantruming two year old.

E.N.T.
Our most recent visit to the consultant for Grace's ear check involved a short (1 hour) wait, and an eagerness to discharge us. It did however put our mind at ease about the current state of her ears. No fluid behind her drums, and the burst drum has repaired itself. Back again in 4-6 months where I no doubt will be fighting not to be discharged.

Health check
I'm not sure what the health visitor was expecting when she visited Grace for her two and a half year check, but she was genuinely astounded at her progress. She was either at or above in all of the key areas, and her speech and memory were particularly impressive.  The HV did mention meeting a few babes with Turner Syndrome, but having never seen them beyond their time in special care she didn't know what to expect of our girls in terms of their development.  Their sheer determination and ability to shine can never be underestimated! 

Memory
I'm sure I harp on about this but I actually cannot fathom how such a young child has such an incredible memory. 
During a conversation about Grace's broken trike, I mentioned that at some point we'd put it in the bin. I could literally see the cogs turning in her brain, then before I knew it Grace was listing every event that I had mentioned we would do at some point. ..at some point we'll need to cut my toenails, we'll need to go to the chemist to pick up my milk, we will go to the Dr's for your letter mummy, we'll buy Winston some poo bags...... each and every one I HAD said at some point in the last month! The teacher in me wonders if I should start on some algebra some time soon. The mother in me stops me from getting carried away. Numbers 1-15 will do for now.

We are having some time out this summer as we have had a tough few months. Family time, the beach, and lots of giggles will be on the cards.  We have of course still got 2 remaining hospital appointments. Woop woop (who am I fooling?! )
I'll always be amazed at how blessed we are though. With many amazing acts of kindness in the past few weeks, and an incredible daughter who never fails to make us smile,  we are exceptionally blessed.

A two hour wait!

I've not posted at all in June, eek sorry! It's been fairly quiet on the Grace/TS front, but fairly hectic for us as a family. Some fab times-a trip to the zoo and paddling pool fun, and some not so nice times. Still, onwards and upwards....

First local Turner Syndrome get together
A few weeks ago, we were lucky enough to participate in a local meet up. Two lovely mummies had decided that there was a need for a friendship group in our local area, and I was beyond excited when a date and venue was agreed.
We had a lovely time at a local country park, Grace was in her element!  So was I ... It was so refreshing to talk with mummies & daddies who had walked our walk. Despite only meeting properly for the first time, I felt at home. Accepted.  Truly understood.  Discussions were rich and varied: sleep, toe nails, diagnosis, food, speech, growth hormone, and the cakes were yummy too!
And I'm pretty sure that between us we were more knowledgeable than many health care professionals that I'd come across.  Not a criticism. Just an observation.
Another intesting topic was how such antenatal diagnosis are dealt with. How a lack of knowledge was possibly to blame for the offers of termination, the bleak outlooks and the general 'we're very sorry but....' conversations. Again, not a criticism, but I'm sure anyone with an antenatal syndrome diagnosis can empathise with us here.

Anyway, an extremely positive experience and 'm waiting with baited breath for news of the 2nd meet, as well as trying to contain my excitement of the upcoming TS conference.  Three months and counting!

Ear, nose and throat
When your child is petrified of hospitals  -no exaggeration-the news you do not want to hear upon arrival to the outpatients department is 'I'm sorry but we have a waiting time of 2 hours today'. REALLY?! Tim and I exchanged looks of sheer horror,  politely declined their offer to take a hospital pager and visit the cafe, and told them that in  no uncertain terms were we staying. After some negotiation we secured an appointment for 4 weeks time.
The apppintment was only routine, and thankfully the daily antibiotics have kept Grace's ear infections at bay for the past 6 months. The burst ear drum was my main concern. 

Food has been less of an issue since I last posted. Well maybe not less but the situation hasn't deteriorated. We are pretty much down to morning and bedtime milk now (if you can call the vile stuff that), and three meals a day so long as they involve sausage, egg or pasta! Raspberries have recently been a hit, and ice pops are a savour in this heat. Grace has several upcoming appointments so we shall know the true impact of the food aversions on her weight.
I must admit my anxiety did go in to overdrive yesterday when I read an article about potential school/nursery lunch box inspections....how true it is, is debatable,  but I'd be struck off the list as a good mother! 

Summer holiday fun??
We go several weeks without an appointment then we have 5 in the space of 6 weeks. We know how to make the most of our summer holidays.....
We have endocrine/paediatric,  ears, community paediatric,  eyes and her two and a half year health check. I must always be grateful at how well she is looked after by our NHS system though.

So yet again that's us until next time, if we haven't melted by then. I'm going to take up Grace's mantra in this heat ...'let's just stay in the paddling pool mummy!'

Pasta, popcorn and ice pops

I get woken most nights at least twice by little G, however recently when I tried the usual tricks in the early hours (fumbling around for the dummy, finding her comforter,  giving her some water), I was surprised that none of these worked.  Then I heard a little voice asking me for a kiss. A kiss. That was all she wanted. I certainly didn't moan about the get-ups that night!

Recently we've noticed that Grace has slimmed down a fair bit. That on top of her growth steadily starting to slow down (though still not noticeably) has meant we've been caught out when buying clothes. It seems her current age clothes are far too big! I had to laugh when I realised the other day that I'd needed to  roll back her cardigan sleeves so far that they were back up to her elbows.  Note to self, this will become the norm soon....

Another reason for her more slender figure may also be down to food issues. A combo of sheer fussiness,  her strong will, and her food intolerances mean that I could probably count the food she'll eat on two hands. No joke. OK maybe hands and toes but that really is it. Currently we have a repertoire of  2 veg, 0 fruit, 1 soya yog, 3 meats, 1 cereal, 1 fish, egg, ice pops, cake, popcorn and a ton of GF pasta. All covered in tomato ketchup, coleslaw or mayo. She's still on prescription milk thankfully, at least she may have some intake of nutrients.
Now I've always been one of those 'my child won't eat junk, and will try everything' kind of mums. At least in my head I have. I bake different things, I look for new recipes,  we eat everything with her and in front of her, and we literally will eat anything. But it just won't do. She is stubborn!
This is a common Turner Syndrome issue, and I think I'll need to turn to the TS experts themselves for some much needed advice. The charity I mean, the only ones who know TS inside out.

No real other news for us, just lots of outdoor fun, giggles and cuddles! Oh and her insistence that daddy is no longer daddy but Tim, Timmy or my Tim. He he he (sorry Tim, I'm not laughing!).

Mummy please lick my snot

Isn't she just adorable?? Polite at least!

Sorry it's been so long since I last wrote, I've had serious brain fog. G however has kept me on my toes! Her G-isms have certainly helped me to crack a smile or two. The funniest being her saying 'hello kitty, meow' to the tiger that was sat several inches away from her at the wildlife park....

We've had one appointment since I last blogged, and that was a routine eye check (covering all bases with regards to Turner Syndrome). I was all set with G's present/bribe for being a good girl/screaming down the department and had my fingers crossed for a swift visit. It was far from swift. Over an hour we waited to be seen, in a clinic that had only started ten mins prior to our appointment  time. How were they so late?  Why was it acceptable to keep a clearly distraught child waiting, only to decide at the eleventh hour that we needed to see a different eye specialist first. The original consultant chose not to see her afterwards due to her 'not being cooperative'. What did he expect of a 2 year old who's petrified of hospitals and had been made to wait in a terrifying  environment for a ridiculous amount of time.
The long and short of it? Back in 3 months.

In other news, we've had a mini break as mummy desperately needed a change of scenery.
It had the potential to be a disaster- a few nights in an unfamiliar place, cramped in a caravan, with oversized furry animals as entertainment. How wrong we were. G adored everything about the holiday....the caravan site, what turned out to be her favourite furry entertainer-Anxious the Elephant, the bright lights of the arcades, the abundance of playparks, sandpits, a tree house and wildlife.  PHEW! I sure as heck needed that change of scenery so daddy would have been taking G home without me.
Granted birds are still her least favourite, but we also managed to take her to a zoo and stay for longer than 10 minutes. Anyone who knows G, knows she doesn't do animals (except Winston of course) so that was an incredible break through!

Also we have an ENT appointment coming up in June,  which is good for two reasons:
1 ) She's had ear troubles despite being on a daily dose of antibiotics for the past 5 months.
2 ) She burst her ear drum a few weeks ago.

I cannot think of what else we've been upto over the past 5 or 6 weeks, but I think I've covered the main events.

Playdoh sniffing.....

......Nappy filling

Calpol loving

Crisp stealing

Scooter riding

Park playing

Peppa adoring

Puddle jumping

Chocolate brownie munching

Cug giving 

...... Beautiful, chatty little girl! 

'I need you' is her newest phrase. Sometimes it's adorable. Other times? Well at other times I need to remind myself that it is adorable! 

Two weeks ago we visited the gastro consultant and dietician, who are incredibly pleased with her progress. She's reflux free (apart from when unwell...which would be a lot?!), and is motoring through her soya trial. We've conquered soya yogurts and lastly need to test actual soya milk. Getting her to try the stuff might be the hardest part! 

We're currently enjoying the Easter holidays. Most days we are up to our armpits in playdoh, and have permanent requests for ice pops, the park and her scooter. A trip to the country fayre was a welcome treat on bank holiday Monday. G loved the freedom, hated the birds of prey, and cheered on the show dogs. 'Well done doggy you got your treat' she'd shout at the gun dogs during the retrieving trials. Hehe! 

I'm desperately trying to prolong the Easter holidays, and to forget that I go back to work next week :( Mind you I need the wages to afford the amount of ice pops and playdoh this girl is going through! 

Quiz night triumph!

Never shall I blog again about 3 nights sleep in a row!! Molars cutting through, a soya trial and general 'G-ness' has resulted in a fair few sleepless nights recently. 

However, I'm still riding high on the success of our first ever charity quiz night - £1070 and counting....

We have an enormous amount of gratitude for those of you who contributed, in whatever format. We were truly overwhelmed by the amount of people who showed us their support. You lovely lovely bunch!! The Turner Syndrome Society will be ecstatic with the funds and I can assure you 100% that it will be put to good use. 

In other news:

-G turned two! Where has the time gone? She had a superb day, was totally spoilt, and stuffed her face full of peppa pig cake. Daddy will need to up his game next year on the cake front....

- We're in the middle of an appointment frenzy at the moment, much to G's distress. The best news came from our endocrinologist who informed us that G's growth appears to have accelerated over the past 6 months. 7cm!! We know that this won't be the case for much longer, but the older she is before we start the daily ritual of hormone injections, the more we hope that she'll be able to comprehend it, and thus not fight it. 

Tuesday sees us back with the Gastro consultant and Dietician. Let's hope the Pedro Pony weeble we've bought will soften the blow for G.

-We've always known G is somewhat of a Jealous Josh, but the recent arrival  of babies in the Chapman family have demonstrated to us just how much G would not like a baby brother or sister just yet. Good job really! 

G is continuing to entertain us, keep us on our toes and talk the hind legs off a donkey. But above all, she continues to amaze us. Her memory, her speech; her affection; her stubbornness; her little obsessions (she's desperate to go to centre parcs); and her uniqueness. Totally adore our girl xxx 

Three in a row!

Ever won a game of noughts and crosses and performed a mini victory dance? Well, we've won our own game of three in a row and have been performing victory dances since 6am.....G has slept for the last three nights! By sleep, I actually do mean sleep for once (not our distorted version which involves umpteen get ups). Just 1 tiny wake up in 3 nights. THIS IS BIG NEWS IN OUR HOUSEHOLD!

Disclaimer: I do not intend to agitate any sleep deprived parent with the above information. We are perfectly well acquainted with the rules of no-sleep club, and are the first to utter 'don't talk to us about sleep' at the mention of 'guess what happened last night....'

However after just under two years of no sleep, we felt that it was necessary to celebrate this small break through :) 

In other news

*'Daddy put glasses on'

Daddy  has had corrective laser eye surgery, and when he woke this morning he could see without glasses. It's a amazing! G however can't get her head around why daddy won't wear them. She's concluded that 'daddy's eyes working'. If only people who truly couldn't see could be helped by such a simple and effective procedure. 

*Endocrine apt

G has an endocrine appointment at the end of the month. Her height will continue to be monitored, and we'll also be broaching the subject of sleep and having her melatonin levels assessed. That aside, now we are under the care of the ENT department, I don't think there's much more we'll need to discuss! Screaming of course will be the order of the day, but at least it's our only appointment this month.  

*Helping others 

Since I stopped my reflux & intolerance support group, the requests have slowly been trickling in from surestart centres around the county for me to lend some advice and support to other families. I knew there was a call for such a support group, I just hadn't found the right people! If our experiences can offer just a glimmer of hope to other families, then I'll be a happy lady. 

I've also been able to share this blog with a couple of families who have recently joined the Turner Syndrome Facebook group and are pregnant with a beautiful girl with TS. Sending you all lots of love & prayers xx 

*Quiz night 

Our charity quiz night is fast approaching, I'm feeling a combination of nerves and excitement! An event has been posted on FB, would love to see lots of people there helping us to raise money for the fabulous Turner Syndrome  Support Society.

Once again, that's us up to date. The next time I post, G will be two years old! I actually cannot believe it.....

Dry shampoo

Is there a dry shampoo equivalent that temporarily sorts washing? Ironing? The dinner? Work even?

I realised this week that I currently have a severe overreliance on dry shampoo, and I'm not sure that my hair is particularly happy about this. Life doesn't allow time to wash hair. Heck it doesn't even allow time to sleep in this household! 

ENT appointment

We very nearly got shoed out of the ear nose and throat clinic, and told to get 're refered in the future' should we have further problems. Err hello do you know how hard I fought to get this referral? Did you not hear me say she's had at least 8 ear infections in little over a year?! Apparently not, it was lost in translation. Once I'd made my point that we weren't leaving, the consultant swiftly changed direction and told us about plan B-Six months worth of antibiotics, and then maybe gromits. Fun times. And bang goes the little good that her probiotics are currently doing for her digestive issues.... 

In other news....

•Why are the bottles yellow? Why is everything yellow? This evening G put a yellow crayon in the dishwasher. Anything remotely plastic, now yellow and waxy. Tims OCD barely allowed for crayons in the house as it was! 

• G has the memory of an elephant, literally. We are AMAZED. She recalls her whole day the childminders, reminds her childminder to get bread, and even reminds me to ask her how her day has been. This one time when she'd pooed, we joked about Winston sniffing her bum as his nose can detect any variety of poop almost instantly. Now it's 'Winston sniff my bum, or ninny smell my poo'. Only once we said it....Just like the one time we visited a friend's house and she pinched a sip of Lukey's apple juice. Ever since then she asks to go to Jo's to have Lukey's juice. Hehe! 

•G is ill again. Cough, cold, poking ears. Standard.

• G turns two in a ridiculously short amount of time. One, maybe two more blog entries, one more hospital appointment, and hopefully the arrival of 1 maybe even 2 baby cousins, and wham before we know it, TWO YEARS OLD! 

Totally adore our babe, yellow crayons in dishwashers and all xxx