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

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.