Tomorrow marks the first day of...

.....G being off sick from school. GUTTED. 

This past week my social media has been flooded with first day pictures. And tomorrow I'd have joined the brigade of proud parents by showing off our girl on her first day of big school (remembering of course to take internet safety into account!).
However.....it's that time of year where our babe starts to pick up whatever germs are doing the rounds. Result? Mummy having to call in sick for her. On her FIRST day.

Some sort of upper respiratory virus and a urinary tract infection are the culprits of G's ridiculously high (40 degree +) temperature. In true G style, it all came on suddenly and when usual 9-5 GP services are non operational. Thank goodness for our local walk in centre, they are amazing.
Hopefully after a couple of doses of antibiotics and some much needed rest, she'll be able to start on Tuesday or Wednesday.

Poor sausage, she has been counting down for literally the past 63 days (tick chart and all). I'd even had to experiment with stain remover on her new uniform due to her insistence on roleplaying her first week of school. It has been a long summer holiday!

In other news:

We've a frenzy of appointments coming up.... eyes (to further assess G's short sightedness), ears (only one infection in the past year!!), physio assessment (balance and coordination issues), occupational therapy assessment (sensory issues) and the much anticipated first growth check with the endocrinologist.
Can you believe it's been nearly six months since we embarked on the daily growth injection journey?! Our first significant milestone in our walk with Turner Syndrome. Daily injections are now a part of G's routine, and we've even managed to knock the daily reward sweet on the head too. Our babe continues to amaze us on a daily basis.

The countdown is on-Annual Turner Syndrome Conferenc commences in 25 days....Can.Not.Wait! Old friends, new friends, giggles, tears, food, dancing, AMAZING workshops and guest speakers, and for one weekend only a chance to feel like we are with people who have walked our walk. People who 'get' us, and G.

So that's another round-up complete. Fingers crossed for a slightly delayed but nonetheless amazing start to her first academic year at infant school. This was a day that at one point I wasn't even sure we'd ever experience. Our little miracle! 

After G comes H....

Just shy of three months ago, G finally became a big sister! A moment she's been waiting for for at least the past two years, and one that she has treasured every day since little H came along. She is well and truly in love, and a total mini mother in the making.

Life felt chaotic for much of the past few months, but we are slowly adjusting to life as four (sorry Black fur baby-life as 5!). G takes every opportunity to shower her baby brother with affection, to inspect the dirty nappies with a fine tooth comb and also to poke and prod her sleeping brother at the most crucial of moments....like when he's finally fallen asleep after what seems like hours of coaxing!
It's hard to imagine how life used to be, partly because my brain doesn't have the capacity to do much at the moment. But sometimes I do fondly remember the days when I wasn't yelling at G to shush, or telling her I couldn't play football right now because little H was feeding, or that she'd have to wait for a cug. Being a big sister comes with its set backs. I have learned to cug and feed, it's important for G to know that she is still adored.

Appointment updates:

Eyes: It seems that G may be heading towards becoming spectacle wearing babe. She's longed for glasses for some time, but the realisation that this may be a dream come true has resulted in it no longer being a dream of hers! Follow up appointment in November to ascertain whether her short-sightedness has indeed resulted in the need to wear glasses.

Community paediatrician: G's annual appointment was as always a positive experience. Our paediatrician is 100% understanding of our concerns, which currently include many aspects which sit under the umbrella of sensory processing disorder. When I'm a little less sleep deprived I will delve a little deeper into this but the general gist is that the nervous system doesn't necessarily receive messages form our senses in the correct manor and thus the body's response/behaviour to them is not as it should be/what we would expect. Currently we are awaiting a referral to both occupational health (for sensory processing disorder) and physio (for her clumsiness, and issues with fine motor skills). The paediatrician has included G's new school in her post-appointment report which hopefully paves the way for a positive and open relationship between ourselves, the health professionals and the school.

In other news...
G starts school in September! I cannot wait-mainly because she is so incredibly excited (and ready). But also because her teacher can answer the barrage of increasingly difficult questions that I face on a daily basis. Some of my favourites include- what's so flappy about flapjack? How much pollen do bees collect each day? Do geese get goose bumps? And the age old question of how daddy put baby H in my tummy...

The girl is growing! Hurrah for the ankle swinging joggers, the tight trainers and the fast becoming set of crop tops that once were t-shirts. (By the way babe-this is the only time in your life daddy will be likely to let you wear tops that show off your midriff!). We are due to see the endocrinologist in September to assess the impact of the first six months of growth hormone.

I'm sure there is so much more to share, but I'm frazzled. Little H has been asleep for the past hour and a half and I'll be kicking myself if I don't use this time wisely. Night all! 

Ps Thank you to everyone for your cards, gifts, delicious dinners, well wishes and prayers, especially during the time of my surgery with little H. It was a miracle that all went so smoothly given my complications.

Problematic platelets

I'm pretty sure that just over four years ago, I had a post with a similar title! Thankfully this title doesn't relate to our gorgeous little G, just me.

The past few weeks have been relatively uneventful for G...a snotty cold here, some more lack of sleep there, lots of loving cuddles with bump, farm visits, fun times at Pre-School, and a trip to BIG school. No medical appointments either for G, so that has been amazing. Just a routine trip to the dentist tomorrow.
Her injections are also going incredibly well. She really is a superstar and we've now trialled many scenarios including: injections without mummy; injections without daddy; and injections without a bath first. I dare not say we've nailed it, but we are over the moon at how she has adapted to life with daily growth hormone injections. The amount of bribery sweets being used, less happy!

Speaking of school - G's new big school have been incredible already. I have met with the deputy head and the SENCo, given them a one page profile of G and her Turner Syndrome, discussed potential issues that may arise, and planned a couple of familiarisation visits (outside of what they'd normally provide). What I love the MOST, is that they said they don't want to label her and look for problems, but equally they want to be informed enough that when an issue arises they can potentially attribute it to her TS (if it is relevant) and come to us to advice. Next stop, a transfer day, a parents information evening and a story visit. EEEK!
Also with regards to school, I've finally given in to the advice of the medical professionals and commenced maternity leave early. It was a bit of an anti-climax, it certainly wasn't how I had planned it, and I am missing my lovely village school very much. However I had to listen to those who know best. That's sometimes a bitter pill to swallow.

I'm sure you're all wondering about our imminent arrival....

Well baby boy  has been causing more than few sleepless nights! My platelet levels have now dropped lower than they did with G (and they were low), which coupled with a complication involving my placenta means that having low platelets and a poor ability to clot during/after my caesarean is far from ideal. Fairly dangerous infact. I'm in the process of having steroid injections to strengthen baby's lungs in preparation for him potentially being whipped out early, and very regular blood tests to trace my platelets. Trips to the hospital are more than frequent now and the car parking is extortionate!! Back again tomorrow.

As they say 'forewarned is forearmed', and the hospital have lots of procedures they can and will put in place on the day.  Not only that but lots of support from family, friends, church, along with an abundance of prayers have finally allowed me to be a little more at peace with all of these complications. G was a little miracle - our little 2%, we're in good hands again.

Signing off today as my last blog as a mum of one, my next post will be as a mum of two!!

Superstar DJ!

Ok so the post title bares little resemblance to today's blog, other than the fact that G is a TOTAL superstar. All that is now going round my head is the 90's Chemical Brothers tune!

We are now 27 days in to daily growth hormone injections and boy what a rollercoaster. At times I didn't know how we were going to ever make this a 'normal' part of G's life, especially not for the next ten plus years. But what a turn around. My hormones took over yesterday and I got a tad emotional....not only had she completed 6 days TEARS FREE, but last night Daddy and G did the whole injection process without mummy. Sniff!

Up until now I had been chief hugger, and any mention of me swapping to chief injector, or not being part of the process at all was met with instant dismissal and tears. However with the prospect looming of me being admitted to hospital early for baby boy (along with an extended stay due to complications), we knew that the job of chief hugger needed to passed on to someone equally as cuddly-and with a huge tummy like mummy! Who better than Pooh bear?! So last night when Winnie the Pooh took over my role, I felt a tinge of sadness, along with elation at how far she'd come in just under four weeks.
Tonight, Pooh bear again filled mummy's big boots, and G managed another tear-free injection with just her and Daddy. Sniff!

It really is incredible to think that under a month ago, our evenings were filled with 'I HATE INJECTIONS' 'WHY DO I HAVE TO HAVE THEM?' 'PLEASE DON'T DO IT'....and now they are all smiles, stickers, magic glittery ice cubes, and a shed load of sweets. Bribery/rewards have played a vital role in this process, as has a nice relaxed routine which G will now refuse to deviate from. Warm bath, Mum and Dad's bed, inject dolly first (yep, a real injection - well a demo pen filled with saline), cuddles, magic ice cube for 30 seconds, sing a nursery rhyme, inject and count to 6, two stories and bed. Bingo!

We don't have an appointment with our paediatrician until July, or with our endocrinologist until around November, so it will be some time before we can start to assess the impact of the growth hormone. However it won't stop G from standing against her wall chart on a daily basis, asking if she's grown. Today the little monkey stood on top of her stool and announced she'd made it past 100cm. Hehehe!

In other news:

- G has taken great delight in helping to prepare for the arrival of her baby brother - choosing wall stickers, helping to touch up the paint work, building the cot and of course sorting through a mountain of baby clothes (courtesy of friends, and my incredibly well-dressed nephew who will only be 9 months older than babe).

 - No appointments until July!! Mind you the amount of appointments I'm having is more than making up for it, but at least it's a break for G.

- G has a place at infant school. WAAAAAAH! I'm actually going in to school for a meeting regarding G's Turner Syndrome next week as it is highly likely that I'll be out of action for G's induction and the parent consultations. Darn pregnancy complications.

-Pink, girly, princesses, fairies and more pink. What has happened to our tomboy? She's turning pinker by the day!

Tomboy, or pink girly girl, footballer or princess, she's our superstar and we are so incredibly proud of her. LOVE YOU!

Growth hormone injection - day 2!

So when I said in my last blog that we were ready to rock 'n' roll with regards to G's daily growth hormone injections, I was wrong. So very wrong! Umpteen phone calls later, one desperate cry for help to the Turner Syndrome Support Society, and we finally resolved the problems (funding, postcodes, small hospital - you get the picture). The training date was set - Friday 31st March.

Thursday was an interesting day to say the least....the main theme of the day was that Friday DID NOT come after Thursday. Despite singing her days of the week song, she then vehemently denied Friday as fast approaching. On top of this, there was a tantrum about everything. LITERALLY. Me coming down the stairs first, opening the curtains and the sun being too bright, shoes, food, everything. Eventually the root cause of the issue was identified - the endocrine nurse was coming to train us up, and start the growth hormone injections the day after. Friday.

Pre-school was a welcomed distraction on Friday morning, as was the iPad when G returned home. Shortly after lunch, our designated nurse arrived, and the tears came thick and fast! Thankfully as there was some paper work, as well as training on a pretend bum first, G soon realised that nothing bad was happening. Yet. Mummy, Daddy, and 3 family members took part in the training, whereby we all tested some dummy injection pens on our own bodies. At the end of the session we signed the paper work to state that the training had taken place and hey presto we were done, or so I thought. But our nurse needed to see us actually inject G before he left....
Well, I'm surprised that our windows didn't shatter with the screaming that ensued. I was chief hugger (I guess it's the child-friendly version of 'pinner-downer'), and daddy was injector. Only G was so strong and so determined to not be injected that the needle came out THREE times, and the nurse stepped in to help us to keep her still. Fourth time lucky, and we were done. How I did not cry myself I do not know!  Pregnancy hormones + the thought of causing pain to your precious child = potential blubbering mess! (and actually, I was later that evening).
HOWEVER, within 5 seconds she was up, and asking for her surprise. Within two minutes said surprise was open, and a sparkly pair of pink high tops were already on G's feet. Ten minutes later and we were happily waving goodbye to our visitors. One hour later were eating dinner in our local Italian. Emotion overload!

Fast forward to this evening. Our new routine under way - bath time to soften the skin and calm G down, and then injection time. G wanted to use the dummy pen to inject Lola (the training dolly) first, and then the tears came. This time accompanied with pleas of 'please don't do it, I don't want my injection, it hurts!'. Where was my rock to crawl under and hide??  We rubbed G's skin with the red, sparkly magic ice cube which we had made earlier in the day (thanks Gem - amazing idea), and it was hug time. Injection went in first time, we counted to the magic number of six, and bingo. Tears stopped immediately, and G announced that it hurt far less than yesterday, in fact the magic ice cube made it not hurt at all. And Daddy already seems a pro at administering it - he's doing far better than I would. Progress...The nurse thinks that it will all be the norm within 7 days, and that the tears will be a thing of the past. We'll see!

In other news:
- She is four! How is she four? It feels like she has been part of our family forever, yet it only seems like yesterday that I was worrying each day that I would miscarry.  We adore our little G, and made it our mission to ensure that she had the best birthday, and didn't she just.

- We had a lovely family weekend away to the caravan in Norfolk. This time we had been upgraded, had lovely balcony and were located in the heart of the woodland. With wildlife on our doorstep, G was up and watching from the balcony at 5:30am every morning. Now I love a good squirrel, and a rabbit or two, but come on G - it was our holiday!

- G has an ENT appointment this week, the first appointment in a good 7 weeks, which is nice. one ear infection during the whole of the Winter, so I expect it to be short and sweet and for them to try and discharge us (as they often do).

- I was spoilt rotten on Mother's day, and one of the best presents was having my car washed. It's a real treat, trust me!

-G is very keen on helping us to prepare for the arrival of her baby sibling. From preparing my hospital bag, to constantly asking what babe is up to, she sure is the doting sister already.

- Thank you for all of the support we've had in the run up to the injections-from cards and mini gifts through the post, to helpful hints, videos messages and general love. G has felt very special and we've much needed the support at times.

So, that is us. I am off to remove the glitter from my hands...downside of magic ice cubes :)

LOVE YOU G!

Our miracle is soon to be 4!

Today I was told that the endocrine nurse had provisionally pencilled us in for growth hormone injection training on G's birthday. ON her birthday. There is no way I am ruining the one day that she has been excitedly counting down to, by subjecting her to her first ever GH injection!

So we are awaiting a new training date. To be fair, had you caught me at the back end of last Friday, I'd probably have been telling you that I'd like to stick the injections where the sun don't shine (sorry)! After the GP and ourselves received a letter from the visiting endocrine consultant last Friday, several hours of phone calls to various medical people then ensued. By 5pm, I was exhausted, frustrated and in desperate need of wine. We were being prescribed a type of pen which had the needle SHOWING, and everyone's lack of knowledge of growth hormone (and need to seek advice from medical texts and Dr Google) had left me less than confident in the whole process.
Thankfully after a little too much chocolate, messages from numerous Turner Syndrome specialists - AKA Turner Syndrome mummies - I was back on top.

Fast forward to today and I'm actually surprised that we are almost ready to rock 'n' roll... the pharmacy should now be in receipt of said growth hormone, and a specialist nurse from the pharmaceutical company is due to contact me asap to reschedule a training appointment,.
The injector pen, which is disposable and will last for 7 daily doses (and comes at a cost of £#*# per week - as I was explicitly told by our GP surgery) will have an uncovered needle, but we are sourcing a special penmate to cover it.

We were kindly sent a football-related height chart from a fabulous TS family, so now all that's left to do is buy a reward chart, mountains of stickers, and G's bodyweight in dairy free chocolate buttons. That and mentally prepare myself for what we have always known to be inevitable. I'm not sure how well my pregnancy hormones will behave during the injection training, or first few weeks of daily injections. Maybe I'll need a reward chart and stickers too?!

DID YOU KNOW?

Growth hormone can increase a girl's final height by up to 2/3 inches- final adult height without GH averages at around 4 foot 8 inches.

It is given daily via an injection, until the bones fuse together and final adult height is reached.

In other news....

-G was an absolute super star at her eye appointment, despite a mere two days of preparation. Surprisingly one Starbucks babycino combined with ZERO minutes waiting time due to the appointment being on time (!) and the promise of returning to her pre-school buddies by breaktime, resulted in the best appointment to date. Perfect vision. One less thing to worry about.

- Anxiety is creeping it's way in to G's everyday little life. Worries about starting school are still rife, concerns regarding mummy/baby are common, and regular activities such as swimming and football are even causing some angst. A friend suggested that as change is afoot with baby number two arriving in the summer, G could be getting a little unsettled. True enough, despite G's abundance of adoration for her new sibling. I also know that Turner Syndrome and anxiety go hand in hand, so this is a factor that we must allow for.

- I am giving up facebook for lent again. Face to face time is at the top of the agenda, especially given that little G is far too often mimicking our love of spending time on hand-held devices. Blog updates will be posted but forgive me,  I am not ignoring any comments or love. I'll reply in 40 days, or thereabouts!

All that is left  now is final preparations for G's upcoming birthday....A trip to the zoo, lots of cake, a picnic, a birthday party and lots of love for our gorgeous girl are all scheduled in for the coming week.

HAPPY FOURTH BIRTHDAY G - YOU ARE OUR WOLRD AND WE ADORE YOU <3

- Disclaimer: I'm not bashing medical professionals in any way, lack of knowledge is just a fact of life due to the rarity  of TS. It can be tough as us parents often have to become the professionals, but thankfully there are many amazing experts around (the TSSS uk being one of them). As for NHS and treatment being free at the point of delivery, AMAZING. I don't actually know how we would afford G's daily hormone injections without it. We love you NHS!

She'll be starting before she turns 4....

...well she turns 4 in a few weeks....we aim to start her within three weeks!

Today was the long awaited, much anticipated joint endocrine appointment to discuss daily growth hormone injections. Our local NHS paediatrician had teamed up with a neighbouring county's endocrine specialist to provide what felt more like a sales pitch than a consultation.

I'm not entirely sure what I was expecting from today-perhaps a leisurely discussion, followed up by an appointment to discuss growth hormone injector devices, then the secret morning of tests which we hadn't prepped G for, more appointments, and probably lots of faffing. Not to mention the funding issues.
But, far from it. The visiting specialist took the lead and within 30 minutes we had been informed of:

• what Turner Syndrome is (!!);
• which injector device G would be using (no choices-funding!);
• a request for funding for the injections which would be filed asap;
• a nurse who would be provided by the pharmaceutical company to visit us in the near future and provide training on injecting our daughter (yes, they had mentioned the words injection and needle at least a hundred times....).

Just like that. I felt like I'd be swept up in a whirlwind. And as always, little G had listened, and her timely tears suggested that as usual she understood every word. What I'd have given to have scooped her up, ran away and told her she'd heard wrong.

However, it didn't take long for a chocolate brownie and some reassuring hugs and kisses to perk G up. Simply exiting the room tends to help too!  Discussions started immediately with her, the questions came and we answered with 100% honesty - her body isn't growing as it should, it is part of her Turner Syndrome, she will need magic growing juice every day given through a growing pen, and daily and weekly rewards would be a key feature.

For now, we wait. I know that our babe is amazing, simply incredible, and she will cope with this change. Soon it will become the norm, and she will show herself to be the ABSOLUTE SUPERSTAR that she is. We love the bones off that girl xx

In other news:

- G is already playing with a disused injector pen (minus needles) which we were kindly sent by a fabulous TS friend. And more amazingly, the pen she sent is the one that we have been told we will be using.

- The first hair cut was a success!! Well, it was cut at least. G had a nervous tummy and was whimpering upon entering the hair salon, and then was reduced to a blubbering wreck by the crocodile gown which the well-meaning hairdresser had hoped to entice G with. Still, it was a result!

- Xavier, Alan and Tomothy (yes TOMothy) are G's latest contributions to the baby name discussions.

- G has an eye apointment this week. I didn't realise until I received the reminder text and thus told her last minute. She was distraught. This girl needs MAJOR forward planning and lots of preparation. Bad mummy :(

- All of a sudden G is writing and drawing, and it's flippin' fantastic. Her name looks like her name, the submarine looks like a submarine (or a ten-eyed spider), and the people on the bus look like people on a bus. Albeit written and drawn by a three year old!! Milestone :)

LOVE YOU G XXX