Who knew?

We're always learning, and I LOVE that about life. Every day really is a school day! So today's post is dedicated to things that I have learnt since my last blog, including some amazing things from our time at the annual Turner Syndrome conference earlier this month.

My most recent revelation came towards the end of  24 hour stint in hospital for G.
WHO KNEW THAT TONSIL INFLAMMATION COULD PRESENT AS SIMILAR SYMPTOMS TO APPENDICITIS?! After being in such severe pain that at times she was unable to walk, the urgent care Dr sent us straight to A&E with suspected appendicitis. That accompanied with a fever, nausea and pain in a very specific location, appendicitis seemed the most logical option.
Only it wasn't.
Inflamed tonsils (which did not hurt G one iota) was suggested as the root cause, and that was that. We returned home earlier today :)

WHO KNEW THAT G WOULD MAKE IT ALL THE WAY TO SIX AND A HALF YEARS OLD WITHOUT AN OVERNIGHT HOSPITAL ADMISSION?! The amount of times we frequented the urgent care centre, and the pediatric assessment unit, it's a wonder how we haven't been admitted before. That  said I'm awfully glad we hadn't...The screaming which accompanied the insertion and removal of the cannula was quite something, and the bed I slept on pulled down out of a cupboard.  I spent the entire night waiting to be catapulted back in-comedy style!

WHO KNEW THAT IN HER REVIEW WITH THE SCHOOL FAMILY SUPPORT WORKER, G WOULD TALK OF HER LOVE OF SCHOOL AND REEL OFF A LIST OF FRIENDS?! Don't get me wrong, from our perspective it can still be really tricky getting her to school. But this half term really hasn't been that bad at all (with a fantastic parents evening too). Well done G <3

WHO KNEW THAT THE PREVALENCE OF A BICUSPID AORTA VALVE IS AROUND 1 IN 300 OF THE GENERAL POPULATION, YET IT IS AROUND 30% IN TURNER SYNDROME?! We had an incredibly informative talk from Professor Bernard Keavney at the conference this year. G's biuspid aortic valve is currently monitored on a yearly basis, and currently presents no concerns. However, due to the potential risk it could pose, we have picked up some more medic style cards which the Turner Syndrome Support Society kindly produce free of charge. These can then be handed to an emergency services worker in the event that G should present with chest pains or shortness of breath.

WHO KNEW THAT LITTLE G WOULD PERFORM THE WHOLE OF THE JUNIOR DANCE IN THE SATURDAY NIGHT SHOW AT CONFERENCE?! Every year we have willed her on on, we've cheered, we've supported, but the anxiety has been too overwhelming for her. This year she did it! I could have cried (I think I did!). We were so proud of our beautiful little miracle.

WHO KNEW THAT FAILING AT SOMETHING COULD ACTUALLY NOT BE FAILURE AT ALL?! This one's for me (and probably lots of you too).....I failed at something that I considered quite BIG last week, a teaching job interview. Only I realised that I didn't fail, it just wasn't right for me. I knew it wasn't right, I had an instinct, but I needed to check. So actually I succeeded in getting one step closer to knowing what does and doesn't work for me, my health and my family.

In other news:

- Our recent Ear, Nose and Throat appointment was a time of great anxiety for G. Generally, at each appointment she has a hearing test and then we find out whether grommets are imminent. Thankfully, yet again we have been told that she is safe for another 6 months.

-As always, the Turner Syndrome conference was a pure delight. The wisdom, the education, the support, the squeals of delight from the girls who have been counting down to seeing their besties, the Saturday night show - no words <3
Honestly if the love and support that is given/shared/shown by the TS family had a red aura around it, then the conference venue would have been visible from space!

- We have a film night on Friday, G literally cannot wait. She now loves a good film, I mean she'll generally watch the same film twenty billionty times, but we can't complain. I'm opting for Beauty and the Beast, not sure if that's top of Daddy's list though...

Sleep, school and screaming

Considering I’ve been up since 4am this morning, sleep is somewhat misleading as a title! Since returning to school, the implications on G’s sleep have been two fold-sometimes she’s totally exhausted and once she’s asleep she’s out for the count... but....the school induced anxiety/overactive brain gives rise to a buzzing babe who is often up until gone 9pm and wide awake by 4am. Throw her little brother into the mix (he  seems to have inherited G’s crazy sleep patterns) and it’s a sure fire recipe for 8am meltdowns. Right in time for the school run. Hurrah....

So I spent much of the summer holidays looking forward to the routine and stability of the new School term. Routine and stability are VITAL for G. Only what I’d forgotten to factor into the equation is her dislike of school. The epic morning meltdowns. The after school meltdowns. The going to bed each night promising myself I’d handle tomorrow’s meltdown better, make her happier, ensure she didn’t go to school thoroughly exhausted from her emotional outbursts. I then spend every journey home from said School run trying to analyse just exactly where it had all gone wrong. Again. I also try to remind myself that she can’t help it, it’s her ‘internal wiring’.   

I know it’s all change, and G can’t cope with change. The transition to year 1 is a biggie. But equally I know that this won’t be the temporary new class blues that many children experience. This is us. Every. Day. Now don’t get me wrong-she isn’t badly behaved at school, or in floods of tears all day, or sat in the corner alone and unhappy. For her is more the angst of going, and her fear of missing out  with mummy and H at home. And the  upshot to G’s emotional side-she’s incredibly loving and caring. I ADORE  that about her.  It’s just working out how to cope with the meltdowns.

So with that in mind, we’re seeking support from her new teachers along with a specialist service offered by the local council (a branch of what used to be autism outreach support) to try and bring about some positive changes in our mornings. Watch this space!

The start of this academic year was a somewhat bizzare one for me, I wasn’t preparing for a return to school myself. Two maternity leaves aside, this is the first year in ten years that I haven’t been back at school myself. Emotionally I’m far better off for it, stress wise too (my head is full to bursting most days-minutes-seconds anyway!), but I do miss it just a tad. My bank balancing is probably missing it more though.

What does the next month hold for us?

October = annual Turner Syndrome conference!! I cannot tell you how excited I am! Every year I say it-the place where acceptance, love and understanding comes in bucket loads. Where information, knowledge, and medical support is simply second to none. Every knows, everyone has ‘been there’, everyone is simply amazing. 

October also sees G return to the ophthalmologist to assess the impact of her new glasses. It also sees our bi-annual visit to the paediatrician/endocrinologist. 

Tomorrow = G’s repeat bloods. Ahhhhhhh! I feel for her, she’s terrified. Love, treats, hugs and more love on the cards for G tomorrow. 

And of course, a much needed half term for G. Yes it will bring a whole new set of challenges but equally it will be fantastic to see the element of school anxiety melt away for a few days for my girl. Where she can be where she loves to be-at home and happy. 

Boys, boys, boys

Thank you for all of your love and prayers over the past four weeks. H is Fully recovered. The operation didn’t quite go to plan but he’s none the wiser (for a fair few years at least). Daddy is also healing nicely-his disc removal was a success. He’s due at the physiotherapist this week, and the specialist in two weeks, and hopes to return to work full time in the next few weeks also. Daddy’s beyond bored, hating my driving, and missing lifting up his babes, but overall his recovery has been incredible. 

That’s us, I think! Bedtime yet?

Holidays, heat and hospitals!

Well I think I blinked and missed July! Thankfully we didn’t blink and miss the British summer this year...our holiday to Cornwall was a scorcher for the first time EVER.

Much of the summer holidays have been spent in the garden under the shade of our homemade sail-style canopy (think bed linen on the washing line come strewn across the garden due to high winds and you’re about there). They’ve also been spent trying to keep up with little H’s antics as he enters the world of walking, and generally attempting EVERYTHING that is mischievous/heart-attack inducing.

With only two weeks of the school holidays remaining, we’re now turning our thoughts to ridiculously priced School shoes, first day back anxieties, and the two main men in our lives both having operations this bank holiday weekend. EEEEK!

News news news...

- G is being monitored for high blood pressure. Now we’ve always had problems with blood pressure montior cuffs fitting G. I know this. I anticipated this. I rang ahead and checked this. ‘Don’t worry, we’re all prepared’ they said.
No. Twenty five minutes of tears and the cardiac investigations team concluded G would not be able to go home with a working blood pressure monitor. I almost wanted to mutter ‘I told you so’ on my way out, but the screams of both children had me otherwise engaged.

- Today’s three monthly Ear Nose and Throat appointment revealed what we’d been expecting but dreading: G is now experiencing hearing loss, and grommets are imminent. She’s been on antibiotics for 3 months but with no positive impact. Thankfully the results from her pressure test (testing for fluid behind the ear drums) have given us a 10-12 week reprieve.

- Last month G got glasses! She’s been desperate to have her very own pair for months, though the excitement has worn off somewhat. Back to the opthalmologist and consultant in three months to assess the impact. It’s all about the three months at the moment!

- So I told the babe she needed a repeat blood test. Most days she asks when this will be. September babe, ages away. Not in her mind. Bless her and her anxiety! Her next endocrine appointment is in October so we’ll be booking in with the play specialist just ahead of that. Let’s hope the blood doesn’t clot this time.

- Bank holidays....an extra day’s lay-in, Sunday evening at the local, maybe even a mini break? Or perhaps the littlest boy having an operation, closely followed by Daddy having one three days later. Little H is having straightforward surgery to find a missing piece of his male anatomy, and Daddy is having slightly more complicated surgery to remove a whole disc from his spine. Gulp. A fairly swift recovery for little H, not so for Daddy. GULP. No work for some time, no driving for some more time, and no picking up the babes for a long time. We LOVE you. Prayers much appreciated <3

- Amidst the chaos this weekend, me and my wonderful hubster do have the rare treat of a belated Christmas present to a beautiful outdoor theatre. Thanks Mum & Dad!!

So that’s us all up to date! We’re officially on the countdown to school resuming (my ex-teacher self would never have celebrated this!), also to the Turner Syndrome Annual conference in October, and of course to making it to the other side of this bank holiday weekend...

This time next year...

REWIND 13 months....If you'd have put my needle-phobic four year old on Davina's new show 'This time next year' and said that in just one year little G would be having daily injections with ZERO fuss, I'd have said there was as much chance of that happening as her sleeping through the night! The child who would scream the hospital down at the mere thought of being called in to be measured and weighed. 

Well, it's this time next year. My recent Facebook memory told me so... Little G has been having daily growth hormone injections for just over a year.
The change has been phenomenal! Not just the physical change, though that in itself is impressive enough - I am literally needing to buy new everything at the moment. Gone are the days when her summer wardrobe would last at least 2 seasons!
When I sit and think about it, I am in awe of how such a young human can adapt so easily to something that was so daunting. So petrifying. Good job really, she's got another 5,6,7 years of it!

Parent's evening
Little G is two thirds of the way through her first year of school. Where has the time gone? It's been a somewhat turbulent ride (especially the morning tantrums), and school seems to be quite an inconvenience for her ..."Mummy, don't they know they are taking me away from spending time with my family?!" ...but for the best part, the girl is doing good. I don't think she'll ever be fully in love with the idea of school, and I think that sitting still/not fidgeting will always be one of her targets, but things could definitely be far worse.

Conference 2018
EEEEEK, we've booked our place at the 2018 Turner Syndrome conference, and I am ecstatic! More so because we really couldn't afford to attend this year, and a local charitable trust kindly agreed to cover the full cost of the conference for us. AMAZING. We are so lucky to have the incredible support of the Turner Syndrome Support Society, and equally so to have a charity who are willing to pay in excess of £500 to allow us to have access to a weekend of vital support and information. It's not to early to start a countdown is it?!

Heart update part 2
I had a call from G's heart consultant the day after the previous blog update. She wanted to inform us that she'd like to see G in one year as opposed to the two years that she'd discussed with us after the scan. Whilst she told us not to panic, she did feel that once she'd analysed the data she felt G's measurements were at the upper limits of normal. NORMAL still though. A little panic ensued, but we concluded that they are most likely being cautious. Caution trumps carelessness!

In other news:

• G loved her caravan holiday, standard! And we're often again in May. Hurrah for budget caravan holidays which you can pay a few pound towards each month. Change of scenery is good for the soul.

• Baby H is 1 soon. ONE. How?! G loves baby H. Like squashes him with her over-zealous hugs kind of love. So beautiful together. 

• Mummy tried working a night time job. Mummy failed. Turns out exhaustion from general non-sleeping kids and mummy duties PLUS exhaustion from working late into the night/small hours = a recipe for the worst ever non-alcohol related hangover. Mummy is attempting to become a mumtrepreneur, though this may be a long term project due to the obvious lack of dollar! On the plus side it's a total blessing being able to do all of the school runs, being there whenever G needs me, and spend my days with baby H. Every cloud...

Oh, and did I mention that G sleeps through the night at least 5 out of 7 days now?! Who'd have thought...

When did we last have our boiler checked?

Nope that wasn't a question from hubby to myself, or vica versa. It was infact the topic of conversation initiated by G during Sunday lunch this weekend!
I'm sure sometimes that she is four going on forty....

She also declared during one of our numerous car journeys that when people fall out they should just say sorry at exactly the same time and go back to being friends.
When did she get so grown up? So wise? So anxious about the state of our boiler!!
When she needs or wants something, such as a new car seat, she asks if we'll have enough money left over from daddy's wages. Even offering to use her own money. When did she become so thoughtful?

Often we forget that our mini babes are like sponges, they soak up everything around them. The good, the bad, and the rest.

I THINK I'D RATHER STAY AT HOME WITH YOU AND H TODAY....
Oh babe, school doesn't work like that, you can't just pick and choose!
Four weeks in and she's loving school. But she's shattered. She's caught every germ going, doesn't have the greatest attendance rate already and has even had a brief stint in hospital. It sure is knocking the stuffing out of her.

CONFERENCE TIME!!
It's nearly upon us, the annual visit to the best gig in town-the annual Turner Syndrome Support Society conference. I know I say it every year, but it's the one place I (as a TS mum) feel truly at home. We are looking forward to an action packed couple of days, though perhaps not so much looking forward to hours and hours on the M6 with a young baby.

APPOINTMENT UPDATE
So the eagerly awaited endocrine appointment to asses the impact of her growth hormone was, wait for it, cancelled. Hmm. Can't be helped I guess! Now to chase up a replacement appointment.

Physiotherapy was more successful-firstly it wasn't  cancelled, and secondly she doesn't need physio!! Her initial assessment led to some rather surprising results: no balance or coordination issues, good muscle tone, surprising physical strength and good body control. Who'd have thought? She's the clumsiest child going!

Tomorrow sees G attend an hour long occupational therapy assessment. A number of issues to be explored include:
Taste and texture, sensitivity to noise, sensitity to clothing and labels, fine motor skills, mini obsessions, need for routine.... the list is endless, and may amount to something, or nothing.

As always we are so blessed with the care we get from the NHS. Recently I saw a US Turner syndrome post regarding the cost of growth hormone in the US... nearly 26,000 dollars for ten months worth of hormone. MAN ALIVE how lucky we are to get the ESSENTIALS for our girls on the NHS. 

And on that note it's time for me and H to run-G's harvest festival service commences in 30 minutes and I'm a total stress head when it comes to school mum related activities (primarily getting there on time and parking!). 

Nearly conference!

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...

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!