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.