You're like a princess but your hair is like seaweed!

I love the precious moments when you get a real insight into your child's thoughts and views. For us those times often come when driving home from a busy day, when laying in bed together after night time prayers, and in the bath/shower. Tonight's comments came as G was washing the conditioner out of my hair. To be fair I'm surprised that she gave me the grand title of princess given that two minutes prior she was highlighting the thick black mascara running down my face! She did also call me a mermaid...

This week has been one of mixed emotions-the joy of half term and spending each day together, but the unsettling time of being out of routine. Throw in to the mix a doctors appointment, a batch of stomach churning antibiotics, the flu nasal spray and a rather lengthy community paediatrician appointment, and you've a recipe for a rather emotional week (for both of us!). Thank goodness for the small yet perfectly timed pick-me-ups that have been gratefully received by all....a beautiful bouquet of flowers from a fantastic family, a day trip to G's new favourite holiday park to visit another fantastic family (sorry G, unless they match Haven's prices we won't be booking anytime soon!!), a visit to G's two bestest pretend big brothers, and a long overdue catch up with a fabulous friend and her two babes. That rounded off with dinner at my parents and lots of TLC from hubby, and we're ready to face another week. Just.

Nasty nasal nuisance 
So that darn nasal bug didn't bog off for long. Ok, it did but it's mate moraxella cattarhalis infested G's canal instead. Cue more antibiotics which need at least two chocolate buttons to fend off the vile taste, and what we now believe to be secondary gastroenteritis (and NOT a reaction to malted milk biscuits). I swear half my life is a guessing game. That and chasing up various consultants and getting them to ACTUALLY listen to me. Who needs time to sleep!

Speaking of sleep, it's currently eluding us. I imagine it's a combination of the antibiotics and the side effect of Mr moraxella, but three weeks of no less than four wake ups per night and I'm somewhat hanging.

Appointment update
I'm a little apprehensive to report the findings of our recent appointment, only because I don't actually know how much of what I said/asked/requested was actually taken on board by the community paediatrician! I shall await the report from them and update you then otherwise I may have had a warped view. What was agreed though was that G does have some elements of sensory processing disorder. The socks, the hair, the noises, tastes and textures, sleeves, anxiety, sleep disturbance, heightened sense of smell, watching TV episodes upside down, fidgeting, meltdowns, I could go on. From what I gather we can't do anything as such. But it's how we deal with things, the allowances we make, and how it affects her daily routine that is important.
During our appointment I mentioned a variety of other things, however I was most disappointed at being told that we can do very little to help G's anxiety (especially around medical appointments, or which she'll have many, forevermore..). I'm now on the case of my health visitor as I'm not satisfied that there is no support for G. Watch this space. I hope.

So, aside from the above we have been carving pumpkins, spending lots of time at the field with the dog, helping out with G's new baby cousin, creating autumnal artwork and generally having lots of fun. I wish every week was half term. Or perhaps not....Just kidding G, I LOVE YOU xx

I hate it when you brush my hair mummy...

Each year I actually struggle to put into words just how incredible the Turner Syndrome conference is. And here I am again for the 3rd year running,  feeling emotional, humbled, exhausted, insightful, loved, understood, confused, astounded and so so darn lucky.

For me this year,  the speech language and communication session really stood out. The discussion of sensory processing disorders and difficulties in communication (not verbal as such-you all know how amazing Grace's vocabulary and actual speech is) really hit home for me. Parts of the puzzle clicked into place. Little things like how much G says her hair and head hurts when I brush it. How it can lead to major meltdowns. There is a reason for it, an actual real life reason! Also how she is so adult like in her speech, yet can take things so literally or miss understanding what we may see as simple. Or the repetitive nature of her questions. The grit and intensity with which she asks and asks and asks again.
The timing of this session could not have been better as I was already beginning to compile a list to take to the community paediatric appointment in two weeks time.

Then there's the Saturday evening ball and show, THE show. Team, you do us proud every single year (you know who you are!). Girls and ladies,  you do us proud standing so united and confidently together as one. Dads. ... what can I say?! Except that G's daddy won't join in with the dad's dance anytime soon!
Each year everyone shows off their sparkle and their character. And this year I couldn't have been prouder when G joined in with the junior dance (thanks to the wonderful kids club helpers for your persistence!). I could have quite literally burst when G was doing her little twirl round, and her cute bum wiggle, and even when she totally lost the plot as Olaf had come on stage! I love the bones off that girl. She never ceases to amaze us.

But aside from the incredibly informative seminars, and the eye watering dance moves, what I love the most is the Turner Syndrome family. Everyone has so much love and respect for one another-girls and families alike. Everyone understands. I understand. I'm understood.  My concerns are echoed, my fears are shared, our highs are celebrated, and everyone wants to share their thoughts and experiences so to help one another.
Each year our family grows,  we meet new families but we all have one thing in common. One thing so very precious.
We laugh, we cry, we worry, we calm one another, we eat, we laugh, we drink,  we listen, we advise, and we cry a little more.

So for this one weekend each year, I wouldn't wish to be anywhere else. I couldn't wish to be with anyone else. And I know that for the foreseeable future (and beyond), on this autumnal October weekend, the TS conference is where the 3 of us will be. My fantastic husband, our stunning daughter, and our TS family.

So for our TS friends old and new (hurrah for finally meeting the fabulous W family and their daughter who was G's friend even before they had met!!), so long but not farewell xxx