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