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!'