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...

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!