Nasties, nausea and news!

Wow, December 23rd... How?! November and December have flown past. Perhaps it's the fact that I have been living in a bubble of nausea, and spent most of my waking hours attempting not to vomit at the slightest smell (imagine a confined classroom with trumpy ten year olds, a daughter who frequents stinky public toilets at least 10 times every outing, and as for the dishwasher and the bin, AGHHH! ). Still, I think that I can say we are ready for the big day. We will of course be spending it with loved ones, and for the first time will be attending our church's Christmas Day service.

Party time:
We were lucky enough to join one of our local friendship groups for the annual Turner Syndrome Christmas Party. LOVED IT! G had a fantastic time - boogied away, ate party food, and even met Santa. And we had plenty of time to natter all things TS and more. Thank you lovely ladies for organising it. We love the TS family.
G also took party in our church's nativity play, her first ever role as an angel. I was bursting with joy :) Though it appears that even an angel needs her mummy glued to her side!

Nasal swab:

Old news I know -Nasal swab from last week has come back positive AGAIN. I refused antibiotics this time. Why? She's currently on them anyway (though not the necessary ones to treat this specific nasal bug), and has been on and off for the past 4 months. Coupled with an extremely sensitive stomach, and more antibiotics than I care to count in her short near 4 years, no thank you.

Nasty bugs:
G has suffered her first winter bug this season. Granted she's had colds and the odd ear infection, but boy they were nothing in comparison. 40 degree + temperatures, for days on end, endless nights of vomiting due to excessive coughing and declining her calendar chocolate. You know she's ill when G declines dairy free chocolate! Chest/throat/ear infection or virus was responsible for her week of misery, but thankfully she's back to her cheeky old self. Demanding calendar chocolate at 6:15am Wednesday morning, and then arguing with me over not wanting to wear jeans, then wanting to wear jeans, then not....we knew she was back on form. Sadly for Daddy Pig, G has shared her germs, so tonight is the second night in a row that I have dinner for one and complete control of the remote. Get well soon Daddy, we love you!

How's the milk trial going?
After saying we were appointment free until after Christmas, one came through. Only the dietician though, so nothing to write home about, though we were a little apprehensive as we'd halted the milk trial due to excessive antibiotic interference. Amazingly we learnt a lot during that appointment....we discussed G's nasal bugs as he doubles up as an allergy specialist too, and he was astounded at the fact that G's Ear Nose and Throat consultant had never investigated up her nose or given her a daily nasal spray. The fact that all that's done is swab - antibiotics - swab - antibiotics was a real shock to him. So our dietician is now writing to our GP to make some suggestions.

No news is good news?
We haven't heard from the endocrine paediatrician regarding G's morning of tests in preparation for starting the growth hormone injection. To be fair, we are in no rush. We wanted G to enjoy Christmas before the trauma that is to come!
We have made some progress though - G is now in receipt of a disused injector pen (thanks N!) which is in her medical kit, and has been used once on her favourite teddy. Also, when G quizzed me on how well she is growing, we discussed that not everyone's body grows naturally and some people need a little help from a growing pen. The seed is being planted...

Sensory processing disorder:
Some time ago I mentioned our visit to the community paediatrician, who did infact take every single one of my concerns on board. Our biggest success has been the acknowledgement of the fact that G does have some sensory processing issues. We have since received a large information pack with ideas/suggestions etc from our local occupation therapy team, which has been a incredibly insightful read. For example....why G seems to need the sensation of bouncing/jumping/being upside down/spinning around. Her receptors crave the extra sensory input. Or why brushing her hair HURTS her so much. Or that her getting excessively emotional about what we deem as 'normal' sounds, and her need for wearing ear defenders sometimes.
Sometimes I feel that no one understands when it comes to G...
'She looks normal'
'There's nothing wrong with her'
'She's just like any other 3 year old'
'Oh well TS only affects her hormones'
It's so much more complex than that! And with each day we are learning more and more about her. Yes she is normal (whatever that is), and yes she is just like a 3 year old, but there are other aspects too.  Sometimes so subtle than only those closest to her, those in the know, notice. I will fight your corner always baby girl.


Oh, and did you hear the news? You couldn't miss it - G is announcing it to the whole world! The cheeky monkey has been using said news to her advantage...comments such as "Daddy get down here and cook scrambled eggs for mummy's baby" and "I think we need to buy some baby things for me to use now for my babies and then you can use them afterwards for yours" have caused much hilarity. She knows how to play us.
And in answer to your question (I had the same one too): The odds of Turner Syndrome affecting babe number 2 are no different than it affecting anyone's babe, regardless of a TS history. Initial scans and blood tests are looking positive. I think that perhaps this pregnancy is going to be slightly different from number 1. Not that I would change a thing. LOVE YOU G!!!

So I think that this is most likely over and out for 2016. Sending love and good wishes to all this Christmas. See you in 2017!

I'm stuck for a title?!

It's not often that I'm stuck for a title - sometimes it's a mundane one, sometimes its alliterative, sometimes it's explanatory, but tonight it's none of the above. Perhaps the lack of inspiration reflects my slightly deflated feeling this evening.

Today was the long awaited paediatric endocrine appointment. I say long awaited as we've believed now for several months that G's growth has gradually slowed down. in the past our consultant has always been fairly happy with growth, and delayed the introduction of growth hormone. Today, we turned up armed with pretty graphs and excel data (created courtesy of my slightly OCD yet computer whizzy hubby) ready to prove our point. To our dismay, or perhaps amazement, we needn't have bothered. Figures spoke for themselves - inclusive of today's measurement, G has grown 6cm in 16 months, meaning she is firmly down heading towards the 2nd centile. Her growth is slowing. This only meant one thing, the inevitable injections were heading G's way, and sooner than I was prepared for...

Before we had a chance to ask the next steps, our consultant was reeling off a plan of action:

-Move our joint clinic appointment forward to ASAP. This will be our first clinic with 2 consultants from 2 different hospitals, one of which who has more experience in growth.

-A morning of tests an blood work at our local paediatric assessment centre to collect up-to-date information to inform the joint consultants. She mentioned a cannula. A CANNULA!

-Get a referral to the nearest endocrine nurse to discuss injection options.

-Training with said nurse to be booked in for administering the injections.

-Start daily injections within 3 months.

BOOM. The first real, tangible, concrete consequence, or do I mean evidence of her Turner Syndrome. Yes she's had heart scans and infact heart problems, yes she's had ear issues, yes she has dietary issues, yes she has many more related TS issues, but equally all of the above could be stand alone issues. Non TS related. And yes little G has had appointments coming out of her ears for the last 3 and a half years. But none of the above have been daily injections. Daily injections that will influence her body and her growth, that are a necessity if we want our beauty to stand a chance of reaching a height of the late 4 foot, or perhaps even 5 foot 0. Granted though, it's not vital for life. It's not like a diabetic who NEEDS those injections to stay healthy, and ultimately stay alive. I once taught a diabetic child who was incredible, and at the age of 8 did his own injections. Truly amazing, that will be G one day I'm sure -she's so independent.  But us, we can say no to these injections. However equally we want her to have a chance. As a 5ft9 mother, I know all about height - from the opposite end of the spectrum all the same.

Whilst I am petrified of how G will react to all of this (after all this is the girl who cries walking in to a medical department, has severe anxiety around anything medical, and needs to be pinned down for regular blood work and booster jabs), I too am thankful. Thankful to God for her health, and for the fact that we live in a country where we can be offered this treatment, with no cost at the point of delivery.

So for now....I need to get over my worries about growth hormone and how G will be, and patiently  await the various letters detailing the upcoming appointments and action plan. We need to purchase a special new doll/teddy and a fake injector pen, and we need to start drip feeding our girl. For she is not stupid. Before bed tonight she asked when she needs her injection next. She listens. She processes, She understands. She asks. She worries. I worry that she worries. I want to protect her from EVERYTHING in life!!

In other news:

-We've recently returned from our church weekend away. What an amazing weekend, and what a fantastic church family. G had a ball, and the added bonus was that most of my family were there too (including my delicious baby nephew). This proved especially handy when G wouldn't eat her dinner!

- We have applied for G's school place. HOW HAS THAT TIME COME ROUND ALREADY?

- We had a little scare with G's eyes recently after the flash of my camera reflected a yellowish/white in her pupils instead of the usual red eye. After seeing a campaign that gave a stark warning that a high percentage of eye conditions (including cancer) are often first identified from a flash photograph, I was more than a little worried. After persuading our eye consultant to see  G before her allotted February appointment, and putting her through the upset of eye drops and an in-depth eye check, thankfully we were reassured that her eyes are perfectly healthy. PHEW! Know the glow people...

- Nasal swab tested positive. Yet again. Phone call appointment tomorrow to discuss the 4th potential dosage of antibiotics in just about as many months. DO ONE NASAL GERMS!

- No more  scheduled appointments this side of Christmas! That is unless the urgent joint endocrine appointment or morning of tests decide to spoil our peace. Needs must, and all for the greater good. I do know :)

So, this post has turned out to be rather lengthy, congratulations to those of you who made it this far. Quite remarkable that I did considering I couldn't even think of a title today- emotions are all over the shop. With emotions in mind...  Thank you to our amazing TS family, of which some have already responded to my SOS's this evening. Ladies, you rock. Thank you to those of you who pick me up and push me forward (Hubby-you are the best). But if it wasn't for our beautiful, loving, funny little G, then I wouldn't even be typing right now. I wouldn't change a thing.

<3 to a special TS mummy this evening <3

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

Sam es el héroe de al lado

The leaves are starting to fall, the nights are certainly darker, and Daddy has had to turn the heating on once already this week, which must mean one thing.....nearly conference time!!!

This year will be our 3rd annual Turner Syndrome conference,  and G's second. We are hoping it will be less eventful than her first - more than 2 hours sleep and less than 24/7 screaming, and it will indeed be roaring success!
I know I bang on about it every year,  but it's the one place that I truly feel at home as a TS mum. It's also the one place that I gain knowledge, insight and medical information that I trust and value above and beyond everything else that I am told.
Tears, laughter, amazement, and a cooked breakfast every morning will be the order of the weekend. And knowing G, a tantrum or two aswell!
Given that we'll be well within the clutches of a new season by then, I'll fully expect an ear infection,  or a cold at the very least.  Let's hope not.

G is obsessed with babies at the moment. It could be due to the fact that we are currently surrounded by pregnant family/friends, and newborns. However it has led to many enquiries from our curious one, including how babies are made, how long it takes, and when daddy will next put a baby into my tummy. 
Apparently G says she'll be a fantastic sister. We are in no doubt of this as she'd most certainly shower a new baby in love. I've no doubt that she'll make an amazing mother one day too, we just need her to understand that there are a lots of ways to become a mummy,  and for her it may not be the conventional method. For now, she'll continue to proudly present her potbelly mummy tummy, and care for her  twin dolls in the most adorable way.

In other news:
* We have an ENT appointment next week. Here's to hoping that there's no more bugs lurking up her nose. We'll also be discussing the pros and cons of being on antibiotics all winter to try and prevent the nasty ear infections that plague her each year.

* We have a community paeditraican appointment in 2 weeks time, where we will have the chance to bring up any social or behavioural worries, and discuss the run up to starting school next year. I'm hoping to go armed with information from the conference!

* Last weekend was spent with family at G's favourite caravan site. Sadly for G it was the last one of the year, that said though it was a superb weekend.
Beach, tree houses, slides, swimming, cheesy kids entertainment and lots of lager shandy ensured it was the classic family break that we've come to know and love.

* G is currently obsessed with watching foreign voiceovers of fireman sam. There are worse things to watch on Youtube I guess! She'll be fluent in Spanish and German before we know it.

* Weekly football training is still G's favourite activity. She's generally up before the crack of dawn and fully dressed in her kit hovering by my bed, but this week will she'll have to wait an hour longer (cue tantrum) as she moves up to the next group. Given her severe dislike of change, I'm hoping her love of football will be enough to get her by.

* G's one-to-one swimming lessons are finally paying off. Today her face went under the water briefly and it didn't result in her screaming to get out for the remainder of the lesson. Small steps...huge leaps :)

That's us for now. I need to tackle a mountain of ironing and devise some more answers for her increasingly difficult 'how babies are made' questions!

Mummy these whatsapps are yummy scrummy!

One month in to the milk trial and yesterday G got her first taste of the fluorescent, orange puffs of cheese that we know as wotsits (though to G they will forever be known as whatsapps!).
Half a packet down and she begged for more, to which I sadly had to resist her charm.
So we've successfully completed stage 1 and know she can tolerate a small quantity of milk powder, and now we're notching it up a level. 
The flip side is that we have to decide whether last night's antics of intermittent crying and needing to sleep in mummy & daddy's bed due to a bad tummy (she NEVER sleeps in our bed) were due to said cheese puffs!

Mummy worries......today was an anxious day for myself and G, starting pre-school. I say starting, she actually started one pre-school in April (to which she will return to at the latter end of the week). 
Knowing what a stickler she is for routine,  anxious was probably the understatement of the century! G's biggest worry was wetting herself - that's what happened on her first day at other pre school. Mine was routine.
Thankfully today went without a glitch.  With updates from pre school throughout the day,  I was able to rest easy. The new weekly visual timetable has helped her adapt to the change too. Phew!

Stay with me forever.......each night after bedtime kisses, G does the cutest thing where she grabs me round the neck and says 'I'm never letting go of you mummy, stay with me forever'. It melts my heart.  I never want to let her go. That is until she follows it up with 'Mummy what can I smell on your lips, it's yucky,  is it dinner?!' Clearly I need to reach for the polos before this beautiful moment occurs!

Just a short update this time round-first day back at school with the children has resulted in a banging headache. Our next update will be within touching distance of G's favourite caravan holiday, and also the annual Turner Syndrome conference. Excited much!!!!

Below: Firefighter practice....1 year on and she is still adamant she wants to be a firefighter...

What temperature is it tonight?

Since the mini heatwave at the start of the summer holidays, G's burning question every evening has been regarding the temperature. Not your average 3 year old's question, but an important one all the same.

You see the heat has been a nightmare for our G. It's resulted in regular battles over nightwear which quite frankly have exhausted us all. Most nights we were able to negotiate full length top or bottoms, with either a vest or pants.  And some nights when even G realised she had beads of sweat forming on her forehead, we were able to push her one step further to short pyjamas, but this was usually linked to whether she had worn shorts during the day.

So tonight when G realised that it was cool enough to wear full length pyjamas and socks, and be able to wrap herself up like a sausage roll inside her duvet, she shrieked with delight. No joke. But that joy in her, that smile, it made me happy too.

Our daughter is awesome. I love that she knows what she wants, and how fiercely she'll stick to what she thinks is right, regardless of how impractical it is. I really hope it will set her in good stead one day when she, standing at perhaps 4'11 or maybe even 5', is faced with one of a much greater height who thinks they can gip her off just because she is small. The blatant demolishing of a group of much older children's sandcastle recently is proof that G is gutsy.

But in the back of my mind I have this niggling thought that just won't go away. What if she is starting to display some tendencies?  And of what?  The above, combined with the need for strict adherence to routine, certain clothings, her severe dislike of certain noises, her over sensitivity to taste/ texture/smell, her advanced language skills,  repetitive (almost parrot like) fashion....it all just makes me think it's possibly part of something more? And if it is, it doesn't matter. We just want to know so we can put the best strategies in place to support her. Heck it's not about labels, just doing the best by our precious girl.

We have a pre-school check scheduled with the community paediatric team in October, so hopefully they'll listen to my concerns and tell me if I'm on to something or simply over anxious.

In other news...
* Eyes: G had 2 appointments at the eye clinic recently. The first went exceptionally well-the friendly smile of the female optometrist combined with the bright posters and fun 'games' enabled us to establish that her eyes are still working in unison and displaying no signs of major problems.  The second appointment with the consultant, who greeted G with equally as friendly smile but sadly due to his gender and a rather alien looking contraption on his head, did not go so well. In fact, he politely dimissed us after 10 minutes and told us to return in in 6 months!

*Pre school worries: G returns to pre school shortly, and whilst she is extremely excited at returning to a familiar setting,  she is incredibly nervous at starting at a second and slightly less familiar pre school setting. With routine being an issue, and the holidays putting her out of kilt, I'm working on putting together a photographic daily timetable, as well as making up some stories incorporating these changes.

* Bronze medal position: Not content in waiting until the autumn term to gain her bronze gymnastics medal, G powered through summer holiday club and achieved it this week. Determination wins over yet again. Darn star jump we got the better of you!!

* Can you wash my football shirt again tonight Daddy? G would sleep in her new pink football shirt if she could. Day after day after day she has worn it. Why didn't you buy 2, or better still 3 of them Uncle?!

* Finally, a plait: G has the most beautiful curls. People comment wherever we go. The downside...the detangling of them. She HATES it with a passion. As for a pony tail,  don't even go there. Tears at the mere mention! So this week we informed her that for sport she needs to start wearing her hair up- it's in the rules and regs. Cue meltdown. After tears and cuddles, G decided she'd be happiest with a plait (so long as it doesn't pull her head and have a bobble that hurts). Man does she look even cuter than normal :)

So that's us! I'm absolutely gutted that the summer holidays are nearly over as I've had the BEST time with my girl. As I look in on her each night, I thank God for what a truly beautiful, funny, kind and loving little person she is. And in G's words, "I'm your's and daddy's girl aren't I"... too right G and we would not change a thing.

Team french manicure

Pamper party? Visit to the nail salon? Girly hen night antics? You couldn't be further from the truth. Football....

Playing football is a daily activity in our household, hourly even. So this afternoon when myself and G embarked on a football game whereby one of our teams would be crowned champion, I couldn't have been more surprised at the team name choices.
'Mummy, I'm team french manicure and you're team tropix.' G gleefully announced.  Our non-girly, jogger wearing,  trainer loving, hairstyle hating, 'it's a grey t shirt day' chanting,  football mad daughter was naming teams after nail varnish colours. The irony!

Family fun
We've had a superb week with Daddy.
Fruit picking, a trip to the farm park,  lots of dog walking, a visit to London Zoo and Auntie L, all rounded off with birthday celebrations for Daddy and the other 2 twiglets, made for a tiring but amazing week. Don't go back to work Daddy!

Normal routine resumed in T-3 weeks
A visual timetable has been the way forward for helping G during this summer holiday time of routine turmoil. Each day we've been besieged with millions (as G would say) of questions about what we are due to be doing in the coming days. Several normal activities have ceased for the summer, and the rest of changed days (AGHHH!). She's gone from knowing the days of the week to being in a complete and utter pickle, and we needed a rescue remedy. Fast.
So the visual timetable was devised- a week by week overview with pictures and keywords/letters outlining our main activities, and I must admit it really is helping. She knows to refer to it if she's confused, which is fantastic.  The only downside is when plans change, which inevitably they do!
I see this being the way forward when she starts school too. Mental note made.

Turner Syndrome meet
Last Sunday we were lucky enough to meet with our local TS friendship group (local in the sense that it encompasses our county and 2 neighbouring ones). Yet another fantastic time had by all, and whilst our group is still in its infancy-4 families with TS daughters and 1 adult- the experience of meeting up is invaluable.  Next stop conference!

Milk trial
The time has come again to trial the dreaded dairy. Milk to be precise.  This week will mainly be spent breaking biscuits containing milk powder (but not gluten!), into minute pieces and feeding G the crumbs. Then I'll turn detective and piece together the subtle but potentially telling clues. Best dig out the pooper scooper!

Next stop-eye appointment in 2 weeks time. Every time she consults the visual timetable I hear 'Mummy will I get to wear glasses like you?'. Maybe G, maybe.

30 degrees...PJs and a duvet!

We have just returned from a lovely,  albeit short break beside the sea. G's beloved pal Winston joined us for the weekend,  and surprised us at how adaptable this home-loving little pooch was (that said, we won't be taking him too often!). Sandcastles were built - and promptly stomped on, lollies were devoured, many 2 pennies were spent, and the evening entertainment comprising of 2 rabbits and a rat (I think) went down surprisingly well. G had a fantastic time!

What strikes me each time we go away though is how G struggles with being out of routine. She loves the sport,the evening entertainment, the arcades, the beach, and ADORES being in a caravan but my goodness she cannot cope. Maybe that's why we only choose to go for weekend trips. Maybe that's why we stick to the same caravan site (except this time....our mistake. Big mistake!). 

So it's becoming increasingly obvious that change is an issue. Many children dislike change I hear you say? True. Maybe it's just me being over anxious. Some recent examples include:

* Swimming lessons- G has been moved up to a group where her daddy is no longer allowed in the water with her.  Gradually (or not so) as each week has passed the hysteria associated with going swimming has escalated until we decided to halt the lessons. 
Giving in too easy? She'll get used to it? She needs to get used to change? No. She's distraught. Now it's affected her love of casual swimming-this weekend on holiday she was excited about the indoor and outdoor pool....until she got in. It was not worth the tears and anxst.

* Dressing for the heat- G wears joggers, t shirts, socks and trainers.  No deviation, except for shorts, thank goodness for shorts.  No other summer wear permitted, despite dripping with sweat. Hhhhmph.

* Dressing for the heat at night - long sleeve Pjamas, a duvet and a blanket on top. Again no deviation. Tonight's compromise landed her in a state, but saw a short sleeve vest, long Pjamas bottoms, and blanket and a fan on its highest setting. 

These are just snippets.  Compromise is tough.  We pick our battles, some aren't worth fighting!
Another thing that makes me chuckle is how Friday is always the day we go on holiday, and as soon as she wakes then we should go. Monday is the day we return, and as soon as she wakes we should return. The latter meant we spent a gloriously sunny day in the car.

In other news...
The strep pneumoniae bacteria in G's nasal canal has cleared. Only to be replaced with another nasty, for which more antibiotics was needed. Course complete, fingers crossed the bugs have done one.

So that's us. I'm only holiday now for 5 weeks so lots of quality Mummy/G time, with a week of Daddy thrown in for good measure. I cannot wait!

Which way is up?!

'I am your biggest fan,  I hope you know I am, but won't you just slow down...'
We are thinking about schools. Big girl schools. My girl isn't big-she's my little girl! Please slow down...

What a whirlwind of a few weeks-4 hospital appointments, 1 emergency booster jab, 1 short admission to hospital and lots more visits to the bathroom. That said, we are happy, healthy and thankful xx

Ear Nose and Throat appointment
I forgot to mention that Grace had a nasal swab at her ENT appointment. I thought it was a redundant detail.  Not so...

Brief spell in hospital
After 3 solid weeks of the squits  (there's no nice way of discussing diarhhea!), the doctor sent us to our local hospital assessment unit. He feared dehydration and felt that 3 weeks was quite long enough!
Six hours later we were discharged with strong antibiotics and a diagnosis of secondary gastroenteritis, caused by a bacteria known as strep pneumoniae residing in her nasal canal. This non-symptomatic bacteria was not a nice one. Turned out that nasal swab wasn't so redundant after all!

Endocrine appointment
G has grown 3.6cm in 4 months, woop woop! The paeditraican reduced our 4 monthly visits to 6 monthly with the view that G would hit her annual target of 5-8cm growth.
(To our dismay, when we returned home and checked our notes, we found that G had only grown 3.8cm in nearly 11 months. It doesn't look like she is on target...)

The paeditraician was happy with G in general-her bone age scans came back fairly normal, as did her bloods.

One surprise result was that her childhood phneumoccocal vaccination had been unsuccessful.  For 3 years we'd thought she had been protected against meningitis C, and she wasn't! I had faught for the meningitis B jab to help protect against as many strains as possible. Little did I know it was possible that her  body had not built up the antibodies after her baby jabs. Cue the emergency booster and a form for repeat bloods to check for antibodies.  I'm so thankful for vaccinations, and our NHS!

Gastro appointment
G has officially been discharged by the gastro team. Woop woop! One less appointment every 4-6 months.

Dietician
G's tummy issues will now solely be under the care of the dietician. Once her digestive system has settled after the gastroenteritis, it's time to start that dreaded dairy trial again. Perfect summer holiday gap task!!

Sleep solutions?
Have we any? We are close to being signed off due to her sleep improving, but I use the term loosely.

So that's us up to date. Time to run- church house group. I've a lot to be thankful for!

Fitting in

Watching a programme the other night about a children's hospital,  one of the doctors verbalised what many parents think, whether we admit it or not is a different matter but I'm sure many think it at some point. Especially us mothers of children who were diagnosed with a Syndrome or condition whilst in utero. I did. More than once....'I hope that my child will be normal.'

I beat myself up about this thought many a time. How awful must I be to care about how my child looks or acts. Of course I'd love her regardless. But I didn't mean it from a superficial point of view. And what is normal anyway?? You see it's because we as parents want the best. We want our children to have the best chances in life, to face as few obstacles as possible. To have the easiest ride in life.
But I realised it didn't matter. The day she finally arrived by the skin of her teeth, so close to not arriving, I didn't care less what she looked like, or what she'd become. It's the love that we surrounded her with that mattered. The strength, resiliance and confidence that we instilled in her. But love, that matters the most.

As for easy rides, it doesn't matter how clever you are or how you behave or what job you have or what you believe in. People can be nasty ass regardless. I know that from experience.
It's how you deal with it that matters.
As it stands we have one feisty little babe on our hands anyway. That and the prayers of her over-protective, over-anxious, ridiculously proud mother. And some.

Tummy troubles
We just cannot get to the bottom of G's tummy troubles. Bottom being the key word. 17 days and counting.  Several days of jiggling childcare, several missed preschool sessions (much to her disgust) and the over familiarity of many many bathrooms! Thank goodness for the newly decorated downstairs toilet...I've been rehearsing in my head what the sheet music wallpaper would sound like.

We have a gastro appointment in just over a week and we really hope they can shed some light. I'm also keeping a food diary to see if the dietician can spot any patterns.  Though a dairy free, gluten free diet is fairly gentle on the old digestive system anyway,  so who knows?!

So you won't try and discharge us?
Finally we have found an ear nose and throat consultant who doesn't dismiss our worries, or more to the point the very real impact of Turner Syndrome on our girl's ears/hearing.
Thankfully for now G has perfect hearing, no fluid behind her drums and has been infection free for 4 months. 
We've been promised annual screening until at least 16, and should or when the infections resurface, they will see us more frequently.
Six months of antibiotics will be prescribed this coming winter also. Downside....her poor gut will take a further bashing :(

The beauty of the NHS
G received her second meningitis B jab recently.  I know this a sore subject for many families, rightly so. But I just have to be thankful that her poorliness qualifies her (at our doctors in our county at least) for another potentially life saving jab.

Next week we have growth discussions with her paediatrician at our endocrinology appointment, and the week after is the much anticipated gastroenterology appointment.  In the meantime I need to crack on with school reports. The past few weeks have reminded me that being a working mummy to a girl who doesn't have the best track record with good health can be a tough one.
Wouldn't change a thing though. Love you G!  

Ps...G's current favourite phrase- I ABSOLUTELY like that. And game-school assemblies. Haha!

Will I get as big as an adult?

I love friday mornings,  no work, no rushing,  and breakfast with my G.
Whilst sat at the breakfast table yesterday, Grace asked me why my legs touch the floor and hers don't.  I explained that firstly we were both Sat down, but also that as I'm an adult I have longer legs.
Her natural response was 'will my legs touch the floor one day when I'm an adult?'
Of course my instant reply was yes. But then I wondered about her potential final height...

We are due to see G's endocrinologist next month, and as her growth had slowed dramatically over the past 6 months, we expect the conversation to veer in the direction of growth hormone. Hopefully she'll tip the charts just over 5 foot one day with the magic growth injections. Hopefully she'll actually let us inject her. Every day.
Who am I kidding? I've visions of chasing her round the garden like my mum used to chase my brother after he'd lobbed his toys out of the bedroom window!

The adverse effects of a getting ready chart
In my last post I must have used the word tantrum at least 100 times... or at least it felt like it. So I decided that I needed strategies. Positive ones.
Rushing to leave the house for 7:10am three times a week causes a lot of stress for G. So after stumbling upon a genius little chart online, I decided to recreate one in the hope of alleviating the 7am meltdowns. 
G loves a good chart. Especially one with velcro flaps! The 5 main morning tasks (brush hair, pack bag etc) each sit nicely under a flap, of which G gets to close and then open a well done flap once all tasks are complete.  I think the satisfaction of ripping open/slamming shut the velcro is her primary motivation, but hey,  whatever works!

As she needs continuity we decided that the chart will be used every morning, despite the fact the days 4-7 are somewhat less of a rush. However I did not anticipate that such a chart would have drawbacks....
5am the getting ready chart routine started today. Granted it wasn't 3am like last Saturday, but 5am is no 6:30am either.
Fully dressed including trainers and begging for toothpaste on her toothbrush before the cockerel had even crowed.
Downstairs wanting to pack bags and eat pre-match bacon sarnies by 6:15 am. 
No tears though. Not a tantrum in sight.
Getting ready chart 1 - G tantrums 0.
On day 1 at least.

Grace LOVES, football. ADORES. HAS BECOME OBSESSED. That is all.

Conference coutdown
OK so it's actually just under 5 months away, but we've been lucky enough to receive a donation from a local charity to enable us to pay at least some of the costs.  Conference is a vital lifeline for us, and I was determined not to miss out due to finances. Charitable trusts are a God send.  

My tummy is fat
As we speak, G has combined her new favourite game of football coaches (hurrah, no lunch box game!), with having babies.
Currently stuffed up her football shirt is a pink, fluffy elephant. I'm not sure which to address first, that humans don't give birth to elephants. Or that she may not have a tummy baby at all.

Right back to little G and those bacon sarnies. Wiping her snot off of the window pane of the back door should be on her chart. Next job on my list instead....

Next entry amidst or post the June appointment frenzy!

I'm funky

Car journeys are often the time when G enlightens me on a variety of topics...who hit who today,  what she ate for lunch, and the secrets daddy told her to keep (yes daddy I know you both ate scrambled egg in the lounge this morning!). Sometimes she asks me the bigger questions in life, such as where babies come from - sadly mummy's tummy was not sufficient enough answer for her and she wanted the ins and outs (no birds and bees here!). And other times she surprises me with quite frankly, random comments. 

Today I was left guessing what 'I'm funky' means. Without further elaboration I've since decided it could mean 1 of 3 things: 1-Her interesting combo of clothing and footwear has caught the attention of others.
2-That beautiful, wild hair of hers is getting her a reputation.
3-Her constant stream of stinky trumps have otherwise been labelled as funky. 
The above being said, she may just as well have overheard another preschooler saying the word funky, and gone in to parrot mode.... Mental Note, don't let G overhear anything that you don't want half the town to know by the end of the week!

Toddler tantrums
Is G still a toddler? She's behaving like a teenager at the moment. I adore her but my oh my can she could shatter windows with her scream.
The novelty of the 3 minute sand timer we purchased has worn off quickly - after several bouts of 3 minutes on the naughty step,  yesterday's response was 'send it back to the Internet mummy because I don't like it anymore'.
On the note of the naughty step, she may have her wish for no naughty step as Nanny could be moving in to a bungalow.  Hmm I think that news is possibly not public yet. Actually, G has known for the past 3 weeks so you probably already knew...

Let's play lunchboxes
What an amazing game I hear you say, I want to play. Be my guest.
You're ordered to sit on the floor with the 'other children',  wait to be handed one of an array of lunchboxes that G has packed with yummy dolls house furniture, told to open it, eat it, shut it, and put it away. And repeat.  And repeat.  And repeat. 
Dare you get up, open your lunch box without permission or ask to go and cook the dinner, then you're in for a whole new level of tantruming. 
Who's up for a play date tomorrow?? Bad luck Soph :)

Caravan crazy
We've recently returned from another long weekend at G's favourite caravan site. G goes crazy for caravans. The weather was incredible,  and so were G's tantrums (spot a theme?)! Still, we had an amazing time, especially so as many of the Chappo clan joined us. G and her cousin were thick as thieves by the end of the holiday. Myself and prosecco were pretty well acquainted too!

We are on the countdown to half term, no tantrums about getting up and rushing out of the door for 7:15 am.  No tantrums about packing her lunch box. No tantrums about me needing to cook dinner after work. I'm not expecting a week of no tantrums because a week out of routine will in itself cause tantrums. However we're both excited about a whole week with Daddy, and the chance to be a little more free.

P.s. We definitely have no more appointments until June, but then we have 4. Bleugh.

No appointments until......OOOPS!

It was too good to be true!
Is it possible to have baby brain three years on? I'm fairly forgetful these days: I often can't find the right word; usually forget what I went back upstairs for; never know where I've parked the car and always forget if I've told people something (apologies if you're on the receiving end of my repeat conversations!). But I NEVER forget G's appointments. Until now....

We were due at the gastro clinic this week to have a general check up with the consultant and dietician, and see how the dairy reintroduction was going. Long story short: a) I totally forgot b) we haven't even tried. Damn. Milk may not have been reintroduced, but soya has, with mixed results. We are desperately trying to switch G from medicated formula to soya milk, and whilst G herself is tolerating this painstakingly slow switch, her tummy isn't coping quite so well. Said appointment would have been quite handy.

In other news
G is officially a pre-schooler and loving it! Second week in and she's so excited that she's up at the crack of dawn questioning why the staff don't share her enthusiasm and open pre-school at 6:30am.
We are thrilled that she has settled in so effortlessly, but admittedly I was anxious about this next step, and so was G. In the week prior to her first session, our bedtime stories were interrupted by dozens of questions....Where will I wee? Will there be hand driers? I don't want there to be hand driers. What are the adults names? Who will I play with? Where will my drinks bottle go....you get the picture. Now the only question I hear is, 'is it time to go to pre-school yet mummy?'
No, 1am is not an acceptable arrival time.

Further news
My mind is actually blank this evening......G hasn't slept recently. I have not slept in forever. Maybe that's the root cause of my mumnesia?  We have a new ENT referral and are awaiting our first appointment. G had her first Meningitis B jab. She achieved her bronze badge at gymnastics. She is now a dab hand at spotting all manner of car badges-Land Rover, Audi, BMW, Ford,  Nissan - that and remembering peoples surnames and addresses. Maybe I could put my teaching to good use and actually harness that memory of hers? That is if my own memory holds out long enough.

Now someone pass me the wine...

PS. No appointments until June. Possibly.

The heart of it

Our heart beats over 100,000 times a day and pumps around 1.5 gallons of blood per minute. Fetal heart cells can start beating at a mere 4 weeks.  Our hearts are incredible, intricate, essential to human life. So when you or a loved one has a problem with such a vital organ, it can be terrifying.

We had amazing support and care from John Radcliffe Hospital when G was in utero, and thankfully she had no major issues with her heart when she was born, unlike some babes with Turner Sydrome.
So some of you will recall our shock just under two years ago when we found out that G had a hole in her heart. A hole that should have closed after birth. A patent foramen ovule.

Well today, after many prayers, lots of worrying, and consideration of potential implications such as heart surgery, we found out that the hole had closed.  Hurrah! Thank God! I cried......embarrasing!
G was such a gem during the echo. Yes she screamed (so much infact that we had several additional staff join us pulling every trick out of the hat), but job done. Hole closed.

Sadly the news was followed with 'but her aortic valve is slightly abnormal and and we will monitor this again aged 5'......but that didn't phase us. Our consultant was calm,  kind and reassuring, as he always is. Unfortunately we also found out that he is retiring and will no longer be G's cardiologist. Still, we are thankful of his fantastic care up until now, and of G's hole-free heart.

Holiday happiness
We've just returned from a weekend away at G's favourite caravan park. Despite being unwell,  she had a blast. Sea air, football, tree houses, sunshine (not forgetting the rain) and a healthy dose of Nanny and Grandad were just what the doctor ordered. For all of us.

No appointments until when?!
June. Surely that's too good to be true?

Light hearted humour
So many sayings and questions that have had us in stitches recently. Here are a selection for your amusement:
* Why did a lady used to be a girl?
* Daddy can we turn the radio over to radio 4 please?
* Why does it have to be light when it's summer and dark when it's winter?
* Why does a girl have to stay a girl? Can't she be a boy later?
* Daddy go faster.....I can't G it's a 30mph road. ...well find another road then daddy!

Oh and as for living in a bungalow -turns out she doesn't want to have a staircase. ..no naughty step. Mystery solved!

I don't want to wear a coat, I want to live in a bungalow

And of course that argument for not wearing a coat makes perfect sense...
This past week has been one of numerous arguments and tantrums. Not only has G turned into a threenager, but we've also embarked on a sleep programme which currently is causing more harm than good.

G turned 3!
I actually cannot believe it. We now have a beautiful three year old. Mind you she's 3 going on 30.
She managed to make her birthday last for approximately a week, and boy did she milk it... Prior to her birthday a family get together with Mr Tumble cake number one; on her birthday a family get together with Mr Tumble cake number 2 AND a Mcdonalds (what else would you eat for birthday tea??); several treats with friends; and of course the obligatory 'it's my birthday so I can boss you around' attitude which came in bucket loads.
G was spoilt rotten and thoroughly enjoyed her birthday week. We all did,  especially the cake. Daddy is fast becoming a gluten and dairy free birthday cake expert. So much so that G was more thrilled at the arrival of her cake than her daddy!

Blood results
Several weeks back we took G for an array of blood tests-some routine, others to ascertain why she is unwell so often. Results thankfully came back as negative, though one marker for infection was under the normal threshold. That said, nothing can be done about this. I'm pleased though that nothing untoward was discovered. Now bog off please infections....

Imminent heart scan
As with many things, you'd look at G and wouldn't even consider the fact that she had a heart condition. I often forget.  But when I remember it scares me.  In two weeks time, we should know whether that ratbag (as G would say) of a PFO has closed naturally, or will require surgery.
Prayers of both thankfulness and healing will be plentiful.

Sleep clinic
Everybody knows that sleep is a taboo subject for us. So we were delighted when we were finally referred to a sleep clinic. I was skeptical at first, but after a  fruitful discussion with the specialist I left armed with a 2 week programme to follow. I felt hopeful. Positive even. A solution to G's sleep difficulties were  promised.
Fast forward to day 6, and my skepticism has returned. And that's an understatement. The dummies have been sent to the dummy fairies, the sheep has ceased to play his sweet (if not slightly annoying) lullabies, and our bedtime routine now includes an abundance of melatonin inducing activities. We are following the programme TO THE LETTER. However.....
We now have a child who not only wakes upto 8 times a night still,  but who no longer drops off to sleep the minute her head hits the pillow, who cries continuously before bed and at regular intervals in the night, and who will do everything including throwing a full blown hissy fit to avoid bedtime. Nothing can soothe her. No one can calm her down. She is often inconsolable. Needless to say I'm not looking forward to the follow up appointment next week. I might just lose the plot with them.

Countdown to caravan time!
As a birthday treat we booked a mini break at G's favourite caravan site. So we are on holiday countdown in our household. It is MUCH needed by all of us. Thank goodness for payment plans and her love of a cheap seaside holiday! Hopefully the sea air will have more success inducing sleep than the sleep programme....

And so here we are. Tired but happy. Happy to have such a fiery, funny three year old. Her abundance of hugs keeps us going, as do her quirky little recounts of the day's activities. ..."So today I was taking my socks off and they all laughed.  Literally they didn't stop. Soooo hilarious"
I need some of what's she's on ;)

I photographed a poo....

I know what you're thinking.....gross, vile infact,  but it was a momentous occasion.
If you've potty trained a child at any point in your life,  I'm sure you'll share my enthusiasm for all things poo and wee (so long as not in pants or on the kitchen floor!). So after 8 months of can she/can't she, we've established she can. We're incredibly proud of this milestone,  and celebrated it with a trip to the museum, lunch out with Daddy, and a new set of sparkly pants. Hurrah!

Half term has been fairly manic for us. Yet another ear infection (I'm not sure she fully recovered from last week's infection), yet another trip to the Doctor, and yet another series of 39.5+ temperatures. Boy those high temperatures scare the heck out of me.

This week also saw a visit to G's paediatric endocronologist and thank God for this fantastic lady. I fire away with my million and one questions, state that I categorically do not want to set eyes on the new ENT ever again, and demand tests to determine why G is always ill. She listens intently, smiles politely, and fulfils every request. Even when the appointment is seeming to draw to a close, and I pipe up with 'oh and can we just discuss....' she still remains polite, professional and genuinely interested in our concerns.

The big news now is that G's growth has virtually stopped. Almost 12cm last year vs 1cm in 6 months. That coupled with some news regarding Gs bones (via blood test) and we ended up in the x ray department getting a routine x ray of G's wrist to check for bone density. 
She will now be seen by our consultant every 3 months, and growth hormone injections are potentially within touching distance.
Thyroid function is also going to be closely monitored because, whilst it's within the normal range,  it's teetering close to the edge.

With regards to the dreaded Ear Nose and Throat saga, we are hopefully being referred to a friend of our endocrinologist who-we are assured-is also an excellent paeditraican and incredibly understanding. As I am much calmer than when I last blogged, I can now elaborate on why we refuse to see our new ENT again.....it went a little something like this
'All kids get infections....all kids are snotty. ....10 years ago we'd have routinely suggested grommets and other minor surgeries but now the NHS has no money.......back when I was a child we played on the streets with streaming noses and it was the norm......ear infections won't cause any hearing loss.....her ears are ok now......well the TS society would say that won't they......I know you may know more about Turner Syndrome than me but.....'.
To add insult to injury ' oh, and LUCY won't have anything considered anyway whilst she has a heart condition'

So now you see why I refused to be within 10 feet of said consultant. Watch this space on ENT developments. I will do anything to get the best care for my amazing, beautiful, loving little babe. Dare anyone stand in my way.

In other news:
● We've got our first scheduled appointment at the sleep clinic.  A much anticipated appointment. Three years of no sleep gets a little tiresome....!
● G turns 3 in a few weeks. Three years old. How?
● Our first ever trip to the theatre was a success, for us anyway. G's pirate obsession saw us at a local production of Treasure Island, and all was going swimmingly until Long John Silver turned up. We never did find out who got the treasure.
● Kins- we've all been renamed Kins. Mummykins, Winniekins,  Daddykins, you get the picture.
● Why is fast becoming the longest obsession yet,  and the questions are just getting harder to answer in toddler speak. Why can I sometimes see the moon in the daylight?  Why is the moon sometimes a circle and sometimes a banana? Why do doggies sometimes go to sleep and never wake up? Gosh G, what will you be asking me when you're 5, 10, 15 years old?
Love how her beautiful mind works. Her incredible memory too.

Despite such a mad half term, I've loved every minute with her. Her smile, her giggles, even her cheeky little comments that push the boundaries. I'm so proud of who she's become in just 3 short years.  Especially when I think back to the numerous times we were told she wouldn't even survive. She continues to defy the odds and show everyone her strength and character.

So that's our round up, I best get back to watching James Bond before I have to start annoying hubby with catch up questions!

Our first mother-daughter Turner Syndrome 'chat'

Last Thursday on our way to the hospital G asked me a question that I'd been anticipating.  Why do I go to the hospital lots?
Knowing we wanted to be as open with her as possible from a young age, I decided to seize the opportunity....

Because you have Turner Syndrome sweetie.
Does Hats have Turner Syndome mummy?
No G she doesn't.
Well you and daddy do don't you?
Actually we don't darling.
Oh. Well who does then?
(Thankfully we'd recently attended a local TS meet up)
Well do you remember when we went to the restaurant on Sunday for a Turner Syndrome lunch?
Yes mummy...
Well R who you did the picture for has it. So does HM who you also did the picture for. And I and G who sat opposite you at the table, and also S.
Oh. They have Turner Syndrome like me?
Yes sweetheart.
Can I have chocolate after hospital??

Bingo. Although the word Turner Syndrome is not alien to her- she has a teddy bear called Turner,  a TS hoodie and we've attended 2 local meet ups with her- we'd never actually told her she has Turner Syndrome.

She won't fully appreciate and understand the full effects of TS for many years to come, but another fact that I know we will need to slowly drip feed is the fact that nearly all girls with TS are infertile.
G is obsessed with babies at the moment-to the point at which she is begging us to have another one, and is frequently shoving babies, pillows and cushions up her top. That breaks my heart. For her.
That said, we will also make it clear that you don't always need to be a tummy mummy to be a mummy. Thank goodness for fertility treatments, adoption and whatever advances in technology will occur in the next 20 years.

Those of you wondering whether the hospital appointment in question was THE appointment......the much anticipated referral to a new ear, nose and throat consultant. It was. And what a shambles. I'm still so incredibly angry, furious infact, that I'm not going to discuss it today.

To end on a lighter (and slightly grottier) note, this occurred yesterday. It caused my sister much hilarity and disgust, in equal measures...
I've got a bogey in my mouth!
What?!
(G proudly presented her tongue with a rather large green friend balanced precariously on the tip)
That's gross you don't eat bogeys, you only eat food! Does it taste horrible?
No its yummy.
Surely not...
No actually it's yummy scrummy!

And I'll leave you on that note!

Head, shoulders, knees and toes....

...eyes and ears and mouth and nose.....

Eyes: We've been attending the opthalmology clinic for the past year in a bid to find out what most people would ascertain in one appointment! It's taken a year due to her distaste of anything 'hospital', but finally, we managed to get Grace seen by her consultant. 
Tears. 'Where's the monkey?' . Eye drops. Screaming.  Chocolate. 30 mins in the coffee shop whilst said drops dilate pupils. Screaming.  Lots of role play by the surprisingly child-friendly consultant, and bingo. G is on the verge of being short-sighted, which caught us unawares actually. We had no real concerns about her sight, it was only due to her Turner Syndrome that she was referred. 
No imminent action required, other than regular tests to determine when she crosses over into the realm of being a wearer of glasses. I had initially thought that Grace had inherited mummy and daddy's bad sight, but it seems that there may actually be a TS link.

Ears: Our New Years eve appointment didn't disappoint-over an hours wait and we left prior to our appointment with a distressed G. I'm not actually that upset as we have our first appointment with our new consultant next week. Let's hope to be taken a little more seriously from here on in. Especially with a suspicion of glue ear, on top of many recent ear infections, and the constant ear 'itching' as she calls it.

Mouth: Night time - cough cough cough. Wake up.  Cry. Sleep. Cough cough cough. Sleep. Wake. Cry. Sleep. Wake. Yes she's always had sleep problems, but the more I think about it, the more I become convinced it's all linked. Ears, nose, throat, small canals/tubes, inflamed canals/tubes. Adenoids? Tonsils? Both? Neither? Who knows. Hopefully the new ENT.....

Nose: I swear G has not been able to breathe properly through her nose since she was born, especially at night. That coupled with a constant dripping tap of translucent nasal discharge and then there's also the suspected sleep apnoea .... that's a few more to add to the list for our new ENT consultant!

In other news.....G has achieved a several more gymnastics badges since I last blogged. As many of you know she has bags of energy, and gymnastics is the perfect release for her. In addition to the gym classes she's also started swimming lessons, which she adores. A perfect early Sunday morning activity for G and Daddy whilst mummy watches from the sideline with a cuppa :)

Not much else to report other than the fact that Grace wants to know when it will snow next as she had oodles of fun pelting Nanny and Grandan with snow balls.  She would also like any of you who are holding onto the last legs of Christmas to remove your decorations and lights. She's confused and doesn't appreciate the fact that mummy and daddy took hers down!

That's your lot for now....
HAPPY NEW YEAR TO ALL OF OUR FRIENDS AND FOLLLWERS xx