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 ;)