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.