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

Today I'm mostly thankful for...

... the invention of the washing machine. I'm deadly serious! After putting on the 3rd load of vomit drenched towels at goodness knows what time, I stood for a moment and had a genuine appreciation for the modern day appliance that is the washing machine. If hubby had it his way, he'd bin the lot after G's coughing fit/vomiting episodes. But seeing as this occurs on a monthly basis, new bedding and towels could prove far too costly.

'G hates being sick mummy'
It wouldn't have been right for another month to go by without G being unwell. What started as a crazy high temperature (as it tends to), escalated into a nasty cough, and then yep you guessed it....sickness. Nine times out of ten her sickness is always temperature and cough related, but yesterday seemed more than just a cough. That said, today she is cooking, tending to her babies, playing on the iPad, and immersing herself in to her favourite game - Doctor surgery (ironic for a kid who HATES doctors!).

'Little G is here!'
G has taken to referring to herself in the third person...it's hilarious! Comments such as 'this little one is awake now' and 'G would like eggs for breakfast' and 'little babe would like a hug' keep us giggling. Goodness knows where she has got this from.

'Will I stop growing soon? What happens when I do?'
I told you she takes it all in. The gentle drip feeding that has occurred over the past few months have culminated in the above question being asked by G... Growth hormones...
So we had 'the chat' - the one where we discuss the magic growing pen, and how the magic growing juice will get in to her body, and how often it will happen. We discussed some friends of ours and how they have magic growing juice. But then she ended the conversation abruptly with 'but I am still growing mummy so I won't need it'. Little by little we will get there.

'What happens if I fall over at big school? Or I miss you?'
G is a little worrier. Sadly she has me to thank for that. But I didn't expect the big school worries to creep in so soon, especially given that we have a good 7 months before she starts Infant School. Once in a while she comes out with a question that quite clearly has plagued her for some time. At the moment it's mainly worries about the fact that I will not be at big school to take care of her, nor will her favourite teddy be. She is also anxious about who will drop her and collect her from school, though thankfully the addition of a new born will mean that mummy will be on hand for school run duties.

In other news:
-G has her appointment with joint endocrine consultants next week to start the process of growth hormone injections.
-Mummy has a couple of scans next week on babe number 2.
- G has been really thoughtful recently - her prayers for her Auntie's new baby boy, and for mummy's tummy to stop hurting, melt my heart. She is so caring and considerate.
- G has a brand new baby cousin and she is over the moon! Congratulations Guys, we can't wait to meet him!
-G is off for her first ever hair cut soon. I know - BIG NEWS. She hates anything to do with her hair, not to mention the sound of hair dryers....we might only make it through the door! Watch this space.
-Grace's sleep problems, coupled with babe number two's desire to stop me from sleeping, have left me feeling like I haven't slept in FOREVER. Nearly four years is more accurate, but my sleep deprivation has escalated to a whole new level. Should you find me anywhere in a zombie like state- feed me tea, chocolate, and send me home. Make that decaf tea. DARN DECAF!
-We have amazing friends and family, those near and those far. Thanks guys xx

SO, that's us updated yet again! More news following the joint endocrine appointment.

P.S It seems that my poorly daughter has decided to look more like a girl today on her sick day, than she has in the past 18 months. 'A pretty cardigan please today mummy'. What?!

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!