Actual real life, face to face appointments!

As G missed a few appointments during the initial phases of lockdown, we had a stack of clinics to attend once it was safe to do so. And over the recent summer months as the COVID stats got better, it was safe to do so...

Heart - We did worry this one would be postponed again, but thankfully the start of the 2nd lockdown is still a few days away, so G attended with daddy. This annual appointment is in Oxford, and usually we'd both go but due to COVID restrictions, and H's nursery hours, I didn't go. I HATED IT! I've been there for every heart appointment at John Radcliffe since birth, infact before birth, so I was more than a little uneasy about not attending. Thankfully nothing significant had changed since her ECG and scan last year. Next year however she will her her first ever MRI so that they can get an exact picture of her heart in general, get a clearer view of her bicuspid aortic valve, and take accurate measurements. I will be there for that one.

Ears - G is due a hearing test ASAP as she has been having some problems with her bad ear, namely random temperatures in JUST her bad ear. There has been no real explanation offered for this occurrence so hopefully the next appointment will shed some light on it.

Endocrine - We missed our 6 monthly paediatric endocrine appointment this April, and were due to have our joint clinic with the visiting consultant last month. Said consultant did not visit, but we did get to meet with G's paediatrician who was able to give us enough information to keep us satisfied. She is growing, WOOHOO, always the main goal! 7cm in 12 months, which again falls within the normal range of 5-8cm. Her growth hormone levels are higher than normal, but they always are. So long as we are monitoring for any undesirable (and potentially dangerous side effects), then she is able to stay at her current level of growth hormone. She still regularly tells us that she doesn't want her daily injection, but she definitely is far more aware of the benefits. 

Community paediatrician - I recently called the community paediatric team for an update, and we are on a waiting list of 300+ at the moment. 300 who need either a school visit or a clinic assessment from the ASD team. We're not far off being at the 2 year mark of when we first started the process and we haven't progressed very far. No real problem with this, but it would be good to to speak to someone at some point. 

In other news

G is back in school and was loving it! Initially she couldn't wait to get back. Four months into home schooling and breaking up for the summer couldn't have come soon enough - neither me or G were fond of the idea anymore. She was desperate to get back into school and see her friends. Though her desire to return stemmed more from the anxiety over the unknown: her new classroom, new classmates and new teacher. After all she was not only transitioning from one class to the next, but from infants to juniors, and one school building to another. Transition in any normal school year is a big thing for her, so a transition that wasn't going to be physically possibly resulted in a lot of what if's for G. Fast forward to two weeks at home for half term, and a lovely break at her favourite caravan site in Norfolk, and she's back to not wanting to go to school. Took longer than I thought for the novelty to wear off!

G moved up to Brownies from Rainbows during lockdown. Of course, this is all taking place over Zoom but it was an exciting milestone for her.

The Turner Syndrome Support Society held a mini Zoom kids club meet last weekend, which G loved. We attend the annual UK TS conference every year, and whilst this year would have been our first year of not attending (the UK were due to be hosting the international conference in July), we still felt a tinge of sadness come October. For us, October is all about the Turner Syndrome conference! It's such an uplifting and important event. So much so that many of us start counting down at the end of the summer. But Arlene and the society did organise a zoom kids club, which included a magician, and was wonderful for the girls. The giggles that were coming from the kitchen on Sunday morning were such a joy to hear (G loves a classic, slapstick comedian/magician!). We cannot WAIT to attend the next conference.

COVID-19 thus far has not affected us personally as a family, but I know that thus far are probably the key words. We did not need to shield for G, and her heart condition was the only real concern but even then it was not significant enough to need to shield. That said it worries me most days, but then that's just general COVID and anxiety for all of our family and friends, not TS specific. Not specific to me. 

So that is us, that is G. We are ok, more than ok most days. We are taking a day at a time, and we are remembering to always be grateful for what we have. 

We've been a little quiet

….but we are ok! It's only because I have been attempting to juggle a fair few plates, and quite frankly I have dropped quite a lot! So after 3 months of radio silence, I thought an update was LONG overdue.

Happy New Year first and foremost!

G had the most wonderful Christmas - lots of family time, lots of food, lots of films, and lots of time off school. I think the latter was the highlight for her, but come January 6th the structure and routine of school was much needed (even though she may not have been able to comprehend that).

November and December gave G a respite from appointments, which again was another highlight.

What's coming up?

In the next few weeks we have an appointment with G's paediatrician to look at her growth and general wellbeing. For us, we'll be most interested in the growth as it had slowed down last time, and as a result her daily dosage of growth hormone was increased.

She is also due an eye test next week, and it's almost certain that she will need a new prescription (the only part she's excited about is picking new frames!). During the last test the optician informed us that her prescription needed to change a fair bit but that her eyes weren't coping with it during the tests. So it was going to be done in 2 stages over 6 months and stage 2 therefore is next week. Not necessarily Turner Syndrome related, more mummy and daddy related. Given that 3 of us wear glasses, little H is also keen to get in on the act. He pinches G's glasses at every given opportunity. He has his very own eye test the week after next.

G TURNS 7...now it's not quite round the corner, but she is counting down the days and given my recent form I am unlikely to blog again between now and March! High heels, a stainless steel water bottle and 'something Vtech' are on the list.

In April we have a heart scan in Oxford, and a hearing test to check if her hearing has declined. But they are far enough into the future that she isn't panicking about them. She now has a calendar to keep a check of important dates - her request.

We have been awaiting an appointment with regards to G possibly sitting on the Autistic Spectrum. After an initial referral made by school 10 months ago, we are still waiting. It's ok though, it's not desperate, it won't change anything. We know that G has many traits of ASD, however it would be good at some point to have the input of a professional so that we can put any additional support in place if and when it is required.

More imminent is half term, which of course she is counting down to because as she tells us most days - she doesn't like school. She may not like it, but she's doing great, and is especially excelling at reading. Our girl can devour books, and still loves nothing more than her bedtime stories and snuggles with us all  <3

I am sure that I have missed a SHED load off of the above, but my memory is not what it once was. Most importantly G is happy and healthy (only a few germs over the holidays, not an ear infection in sight). She adores her little brother  and she continues to make us super proud parents.

I just want to stay at home!

Since I last blogged our beautiful G has finished Year 1, had the most wonderful summer break, got some new glasses, had a paediatrician visit, had a CAMHS mental health assessment, had a full set of blood tests, spent the best part of a week in a wetsuit (with a pretty special tan to match), and most recently become incredibly anxious about her return to school. 

This summer has been crammed full of family time: two whole weeks of Daddy time, every single day with mummy and H, and a week in Cornwall with my family. G has absolutely ADORED this. For her - family is everything, and various health professionals have gone as far as to suggest she struggles with separation anxiety. So 6 weeks and 2 days down the line, and it doesn’t take a genius to work out that G’s greatest angst is the return to school. 

As routine is key, and change is the enemy, the start of a new school year is always going to be a tricky one to navigate. Thankfully one element of change has been removed by fact that G is having the same teacher again this year. Different classroom, different children, but same teacher. A small win for G. We are ready for the morning with prayers, the promise of after school treats, morning  routine chart, a scrummy breakfast and a calming colouring sheet. Watch this space!

This summer we’ve realised that G genuinely is at her happiest and most carefree when she is by the sea. Wetsuit on and curls flowing freely in the sea air, G is a picture of joy. And that makes us all happy. A week in Cornwall was the tonic that was needed, as it is every year. But for G that release is needed more frequently....We spoke a lot this summer about our dream of owning a VW Transporter so that after a tough week of school, we could just take off on a Friday evening and head to the sea to allow G’s stresses and anxieties to just melt away. Sadly for now the reality of mummy not doing her ‘proper job’ anymore means that the ‘camping in the VW by the sea each weekend’ dream, remain just that. FOR NOW.

In other news:

* G has grown! Though according to her endocrine paediatrician, only by an ADEQUATE amount (just over 4cm). As a result, we were ordered to increase the dosage of G’s daily growth hormone injection. But... after I had pointed out her recent blood results had shown borderline high/too high growth hormone levels, only a small dosage increase was agreed. Not sure why it took me to point that out, but heyho. 

* As G has struggled with high anxiety for quite some time, our paediatrician had decided to make a referral to the Children and Adolescent Mental Health Services. Now I’d already been given a heads up by a different paediatrician (whose children I happen to have taught) that if there is anything ‘else’ going on with your child, then CAMHS will often pass the buck. I remained open minded and we were seen fairly quickly for the assessment (very handy having that friend whose children I taught...). HOWEVER, as G’s  school have made a referral to the Autism team, and due to G’s diagnosis of Turner Syndrome, the CAMHS team felt that we ought to continue down the current lines of enquiry. They felt her anxiety was linked to her TS and most likely Autistic Spectrum traits. I guess this one can be viewed as a ticking the box exercise. 

* G has new glasses. This was very exciting news in our household! It was her first ever time at a regular opticians as all of her previous appointments had been hospital based. She did get the classic tummy aches and panic, but she did incredibly well for her first eye test.  Her prescription had changed which meant two new pairs of glasses. If only she was still that excited 5 weeks on...

*  G finally loves a film. We only have a small selection of vetted films as there are so many elements of film that can cause anxiety-music changes, baddies, bright lights, sudden sounds, sadness but to name a few. But this is a huge step. The most recent additions to the safe list are The Little Mermaid and Charlie and The Chocolate Factory. 

So that’s us up to date, I think. I’m not sure how I managed to miss a July and August blog. Far too much family time fun ❤️

Ooooo and did I mention that we are on the countdown to the Turner Syndrome Annual conference? EEEEEEEEEEEEK! I just seem to have failed in my mission this year to secure full funding for the conference. That will most certainly not be stopping us from attending the best gig in town with THE best extended family though. Too precious and important an opportunity to miss. 

Love you G!! 

Now I’ve swallowed 3 and saved 3!

I think the tooth fairy may be bankrupt soon-number 6 fell out yesterday (not swallowed either), much to G’s delight. And much to our delight, she  went to bed the earliest she’s been in years. LITERALLY years. Turns out if she was awaiting the tooth fairy every night, she’d fall asleep at by 7pm, and not her usual 9/10pm! How many teeth do 5 year olds have?! 

Big wins...
We had a family trip to the Dentist recently. This, as with anything medical, causes G days and days of anxiety, nervous tummy, sleepless nights. However what a huge breakthrough we had...for the first time ever she sat on the dentist chair (on my lap), and allowed the dentist to look in her mouth from a distance of less than 3 metres. This was big news in our household! We were incredibly proud of this HUGE achievement. G’s dental health is important-another quirk of Turner Syndrome.

Another win-G’s eyesight with her glasses is pretty much perfect. So she can now start attending the optician every six months as opposed to the opthalmologist at the hospital. Whilst I know this will probably cause her just as much anxst, we won’t be on hospital grounds, and we won’t be paying the parking fees. Wins all round.

This month has seen a lot more chasing up. It transpired that we haven’t had a cardiac appointment as G’s local hospital has cut their ties with John Radcliffe specialist hospital. As a result she was almost left in limbo. Had I not ended up getting the secretary’s number at JR, I don’t think anyone would have chased up G’s heart at all.

With the above in mind we’ve made the decision to leave our local hospital for her heart health and travel the distance to Oxford. After all it’s only an annual trip, and as I was seen there when pregnant with G (and JR still houses the specialist we saw at our local hospital last March), I have a lot of faith in them and their specialist care. So in April we’ll be having a day trip to see G’s cardiac consultant. Maybe we’ll find a nice farm park  for a pit stop treat on the way home.

Half term happiness....
G could not have been happier this half term, and I was surprised at the drastic reduction in meltdowns. This time I had ensured we had an activity planned every day, and a timetable of this so G was aware of what was happening and when. Plans plus sunshine equalled one happy babe. One happy babe equalled one happy mumma!

Next month sees more appointments including:
Paediatrician for a general update, height and weight check, discussions around anxiety and general health.
Blood pressure monitoring, I’m skeptical that they’ll even get a monitor to fit/work, so I’ll leave this one here.
Ear, Nose and Throat consultant to continue to assess the fluid behind G’s ears. G talks a lot about grommets-but not in an ‘I want grommets’ way!

Next month also sees G turn 6. SIX. How? 

I say this every year but we are so incredibly blessed and thankful to have G in our life given that her odds were so tiny (remember the 2% ?!) It’s totally enriched us having her as our daughter, she’s an absolutely delight and a cherished gift from God. She’s given us strength we didn’t think we had, and love and happiness on a whole new level. Soon to be happy birthday G! 

What's worse than telling a needle-phobic child her bloods are due?

Telling her she needs her bloods doing again as her sample clotted and couldn't be tested!

"Mum, how often do I need blood tests?" asks G (generally before and after most blood tests).
"Usually annually, which means every year G. However sometimes you might need it half way through the year."
"Ok then, so I had then done when I was 5, so I'll not need them until I'm 6?" she replies, a twinge of hope in her voice.
"Hopefully so, yes," I say. Knowing I can't promise it will be a year.

~

G had to attend her latest paediatric endocrine appointment with Daddy as I was tied up elsewhere with little H and his MMR jabs. Daddy was a tad nervous as he knows that when it comes to G, my brain is full-to-bursting with questions, and information. But I'd sent him armed and ready, and he did good (McDonalds and all......):

• As expected, G is continuing to grow well. Another 3cm in just as many months. 
• Due to headaches, and general pains, G's daily injection dosage is being DECREASED, with a view to reassess in 3 months time.
• The results of the bloods were non-existent due to aforementioned clotting saga.  
• G will need a 24 hour blood pressure monitor next week as a result of some high readings, and also the headaches. How it will be possible for a 5 year old to wear a blood pressure monitor for 24 hours, function as normal, go to school, and have accurate readings I do not know!

So, we await the next appointment, and then go through the rigmarole of booking in with the paed team and play specialists to get another sample of blood (hopefully minus the needle slipping out, and the wrong pots being used!). We are also awaiting ears and eyes again, but generally she copes fairly well with these now. Thankfully.

In other news:

G only has a few more weeks left in reception class. How has that happened? She is still no school lover, and thus the prospect of a 6 week break is filling her with great joy. The end of the 6 week break and return to school is filling me with dread...

We had sports day yesterday. I say sports day in the loosest sense of the term (non-competitive), but she still thoroughly enjoyed herself, and I was still a beaming mumma cheering her on from the sideline.

Daddy has his big operation in August. No work, playing with the kids, lifting the kids, or anything (including lawn mowing, much to his disgust) for 4-6 weeks. We're praying for a safe op and speedy recovery so we can have daddy back to normal, minus the nasty pain he's had for the past few years.

G is powering through her daily antibiotics, and her left ear is playing ball so far. Lets hope it continues.

Countdown to Cornwall. Eeeek, not long now, then lots of quality family time. This sunshine best stick around!

P.S. Did you see any Turner Syndrome posts for Turner Syndrome awareness day on June 21st? My newsfeed was CRAMMED full. I was, and am, so proud to be a part of the TS family, and to have amazing G as my daughter. 

It was a 4 stickers, McDonald’s and new nightie kind of morning!

Why have three appointments on separate days when you can have them all at once? In theory it seemed like a good idea: less parking fees, only one day of the holidays interupted and only one bout of anxiety for my babe. But when one of the appointments involves a blood test, one appointment would have been MORE than enough! 

I’d even thought we’d managed to save time by getting the magic cream applied prior to the hearing test. But no, we spent the entire morning at the hospital. Her least favourite place. I didn’t even have my morning cuppa. I could have REALLY done with my morning cuppa (perhaps laced with brandy!). Especially given that it took 3 veins, and a needle ejecting itself from G’s hands to get just a few drops of the red stuff. 

Twenty minutes of screaming and being begged to go home, and we finally left the paediatric unit (with G clutching a new Frozen nightie that the play specialist had given her). Unfortunately we then needed to head back to Ear Nose & Throat for an appointment with the consultant ... what G didn’t need upon arrival to ENT was two student doctors wanting her entire medical history, and using her as a mini case study. Thankfully their enthusiasm, kindness and abundance of stickers ensured that G became a willing participant. She even showed off her war wounds from the various blood test attempts! 

So to summarise today’s events:

- G has had such a bad run with her left ear that her hearing is now slightly impaired, and she is on a three MONTH course of antibiotics. Then if all else fails, next stop is grommets (can you imagine the angst a cannula would bring?!). 

- When the needle slips out of the good vein, and several more veins need stabbing, no amount of blowing bubbles and Julia Donaldson stories will bring about calm.

- Appointments don’t get easier with age, the screams just get louder, and the restraining trickier. 

- McDonald’s chippies still have the ability to turn my girl’s day around! Thank you Golden Arches. Though may I suggest you source some of the strong stuff to slip into mummy’s Coca Cola next time...

And when I next get questioned about whether my daughter needs to have her bloods taken in the Paeds unit with a play specialist present, as opposed to the path lab, I shall let G to scream for around 20 minutes and then let them make up their own minds.

In other news:

- We had an AMAZING time away at the seaside. You can’t beat family time, wildlife and the sea air. 

- Mummy has a new job. Just a couple of hours a week, no stress, no hassle, no childcare, no planning marking or assessment. One day, one day maybe I might return to teaching. But then again I might not. 

- G is back to see the endocrine specialist in June-top of the hit list is growth, constant tummy aches, high blood pressure (and that’s not mine!), and blood work results.

- Little H has his surgical consultation in June. 

- Daddy has his surgical consultation in June.

- Mummy has a mini biopsy of a nasty in her mouth in June (I’ve been assured mini nasty is not so nasty and it’s procedural, that’s all.)

- Mummy will be rocking in a corner by the end of June!

Oh and I’m going grey. GREY!!!!!! 

This time next year...

REWIND 13 months....If you'd have put my needle-phobic four year old on Davina's new show 'This time next year' and said that in just one year little G would be having daily injections with ZERO fuss, I'd have said there was as much chance of that happening as her sleeping through the night! The child who would scream the hospital down at the mere thought of being called in to be measured and weighed. 

Well, it's this time next year. My recent Facebook memory told me so... Little G has been having daily growth hormone injections for just over a year.
The change has been phenomenal! Not just the physical change, though that in itself is impressive enough - I am literally needing to buy new everything at the moment. Gone are the days when her summer wardrobe would last at least 2 seasons!
When I sit and think about it, I am in awe of how such a young human can adapt so easily to something that was so daunting. So petrifying. Good job really, she's got another 5,6,7 years of it!

Parent's evening
Little G is two thirds of the way through her first year of school. Where has the time gone? It's been a somewhat turbulent ride (especially the morning tantrums), and school seems to be quite an inconvenience for her ..."Mummy, don't they know they are taking me away from spending time with my family?!" ...but for the best part, the girl is doing good. I don't think she'll ever be fully in love with the idea of school, and I think that sitting still/not fidgeting will always be one of her targets, but things could definitely be far worse.

Conference 2018
EEEEEK, we've booked our place at the 2018 Turner Syndrome conference, and I am ecstatic! More so because we really couldn't afford to attend this year, and a local charitable trust kindly agreed to cover the full cost of the conference for us. AMAZING. We are so lucky to have the incredible support of the Turner Syndrome Support Society, and equally so to have a charity who are willing to pay in excess of £500 to allow us to have access to a weekend of vital support and information. It's not to early to start a countdown is it?!

Heart update part 2
I had a call from G's heart consultant the day after the previous blog update. She wanted to inform us that she'd like to see G in one year as opposed to the two years that she'd discussed with us after the scan. Whilst she told us not to panic, she did feel that once she'd analysed the data she felt G's measurements were at the upper limits of normal. NORMAL still though. A little panic ensued, but we concluded that they are most likely being cautious. Caution trumps carelessness!

In other news:

• G loved her caravan holiday, standard! And we're often again in May. Hurrah for budget caravan holidays which you can pay a few pound towards each month. Change of scenery is good for the soul.

• Baby H is 1 soon. ONE. How?! G loves baby H. Like squashes him with her over-zealous hugs kind of love. So beautiful together. 

• Mummy tried working a night time job. Mummy failed. Turns out exhaustion from general non-sleeping kids and mummy duties PLUS exhaustion from working late into the night/small hours = a recipe for the worst ever non-alcohol related hangover. Mummy is attempting to become a mumtrepreneur, though this may be a long term project due to the obvious lack of dollar! On the plus side it's a total blessing being able to do all of the school runs, being there whenever G needs me, and spend my days with baby H. Every cloud...

Oh, and did I mention that G sleeps through the night at least 5 out of 7 days now?! Who'd have thought...

A whopping 7cm!

We knew that G had grown - her aged 3 school trousers had suddenly become ankle swingers, and her smallest size school T-shirts were quickly morphing into cropped tops, but we didn't quite realise just HOW much she'd grown.

So when we attended G's endocrine appointment several weeks ago, we were astounded to find out that not only had she grown nearly 7cm in 7 months, but she had jumped a centile on the growth charts too. To put that in to context - G had a period of 16 months (or thereabout) where she only grew around 8cm. This infact was the period of slow growth that triggered the start of her growth hormone injection. 

HOW AMAZING.

We are so lucky that G can receive this treatment. Sure she still has a grumble about her daily injection, and the breakthrough of not needing a numbing ice cube was only short lived, but she is still a trooper. She's more than that...SHE'S AMAZING.

A difficult topic of conversation

One aspect of Turner Syndrome that I am still to get my head around, is the lack of functioning ovaries, which sadly for most means not being able to create and carry a biological child. This is still a subject that G has little to no understanding of, and is something that we want to drip feed to her sooner rather than later. I'm currently researching stories and books to give rise to such discussions.

Last year I was lucky enough to partake in a textiles project which aimed to give a voice to mothers of girls with Turner Syndrome, and specifically voice our views on infertility. What a fantastic day, and what a beautiful project. The quilt that was produced was a masterpiece. It spoke a thousand words. I can't wait to write a blog about this. Watch this space.  

Conference

I can't believe that I haven't blogged about the TSSS 2017 conference! What an incredible, informative, heart-warming weekend it was. From the uplifting performances at the Saturday night Ball, to the mum's heart-to-heart where we could pour out our deepest thoughts and worries. Lay our souls bare. And every one in the room knows exactly how you feel. Every. Single. One. 

G didn't cope quite so well with the weekend. Over-excited, over-tired, over-stimulated and totally out-of-routine was our girl. It was melt-down central. (Gosh it's hyphen central too!). That said, it was worth it. She had a ball. And what we get out of it, as a family, is well worth the  tears and tantrums! Plus some of my favourite people were at conference. Miss you already xx

A HUGE thank you goes out to Arlene, Carlene, everyone at the society and the guest speakers. I learn more in one weekend than I do throughout the rest of the year or from any other health professional. 

Appointments

Ears and eyes - check. Back in six months time.

Endocrine - check. Back in six months. Although a referral to a large children's hospital, who offer a dedicated Turner Syndrome clinic, is hopefully on the cards. Daily growth hormone increased slightly. 

No appointments before Christmas now - CHECK!

School

This year was the first time that I viewed the count down to half term in a totally different light. Normally, as a teacher I am willing the next holiday to make an appearance quick sharp. HECK we teachers have an actual countdown, usually in our diaries, and from the first day of term!
Whereas come October I was secretly hoping to skip half term. G needs routine, loves school, and without either she could potentially have been a handful... That said, G was in desperate need of a break. As of September, her immune system seemed to take a leave of absence, so a week at home was necessary for medicinal purposes.

In actual fact I LOVED my week with my biggest babe. I hadn't realised just how much I had missed her since she started school. We had lots of fun, baked cakes, played in the park, and shared cugs and kisses with baby H. 

G has settled in to school really well, and loves sharing her daily learning with us. The school have been incredibly supportive of any needs that arise due to  her Turner Syndrome. 

A report from the occupational therapist regarding some of her struggles (fine motor skills, concentration, sensory processing disorder), along with their own observations and our input have resulted in G receiving the support that she needs. We were also pleased to learn that school share similar views to us with respect to G displaying traits of Attention Deficit Hyperactivity Disorder (ADHD). She definitely ticks the boxes for the three main aspects - hyperactive, impulsive and inattentive. As this can fall under the umbrella of Turner Syndrome, no EXTRA diagnosis is needed, and again the school are putting measures in place to aid G. Granted, not much support is required yet, but they are willing to do the leg work as and when it is needed.
Happy G, happy mummy and daddy!
Mental note for mummy-stop it with the 'sit still and concentrate'... 

In other news...

I'm sure I had other news?! My brain doesn't work any more! I'll update this section as and when some of my brain cells start to function again.... I did eat a mince pie, tune my DAB radio to Xmas Magic, and watch some Christmas adverts today. Bet you wanted to know that important info didn't you!

LOVE YOU FOREVER AND ALWAYS LITTLE G

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!

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

Will I get as big as an adult?

I love friday mornings,  no work, no rushing,  and breakfast with my G.
Whilst sat at the breakfast table yesterday, Grace asked me why my legs touch the floor and hers don't.  I explained that firstly we were both Sat down, but also that as I'm an adult I have longer legs.
Her natural response was 'will my legs touch the floor one day when I'm an adult?'
Of course my instant reply was yes. But then I wondered about her potential final height...

We are due to see G's endocrinologist next month, and as her growth had slowed dramatically over the past 6 months, we expect the conversation to veer in the direction of growth hormone. Hopefully she'll tip the charts just over 5 foot one day with the magic growth injections. Hopefully she'll actually let us inject her. Every day.
Who am I kidding? I've visions of chasing her round the garden like my mum used to chase my brother after he'd lobbed his toys out of the bedroom window!

The adverse effects of a getting ready chart
In my last post I must have used the word tantrum at least 100 times... or at least it felt like it. So I decided that I needed strategies. Positive ones.
Rushing to leave the house for 7:10am three times a week causes a lot of stress for G. So after stumbling upon a genius little chart online, I decided to recreate one in the hope of alleviating the 7am meltdowns. 
G loves a good chart. Especially one with velcro flaps! The 5 main morning tasks (brush hair, pack bag etc) each sit nicely under a flap, of which G gets to close and then open a well done flap once all tasks are complete.  I think the satisfaction of ripping open/slamming shut the velcro is her primary motivation, but hey,  whatever works!

As she needs continuity we decided that the chart will be used every morning, despite the fact the days 4-7 are somewhat less of a rush. However I did not anticipate that such a chart would have drawbacks....
5am the getting ready chart routine started today. Granted it wasn't 3am like last Saturday, but 5am is no 6:30am either.
Fully dressed including trainers and begging for toothpaste on her toothbrush before the cockerel had even crowed.
Downstairs wanting to pack bags and eat pre-match bacon sarnies by 6:15 am. 
No tears though. Not a tantrum in sight.
Getting ready chart 1 - G tantrums 0.
On day 1 at least.

Grace LOVES, football. ADORES. HAS BECOME OBSESSED. That is all.

Conference coutdown
OK so it's actually just under 5 months away, but we've been lucky enough to receive a donation from a local charity to enable us to pay at least some of the costs.  Conference is a vital lifeline for us, and I was determined not to miss out due to finances. Charitable trusts are a God send.  

My tummy is fat
As we speak, G has combined her new favourite game of football coaches (hurrah, no lunch box game!), with having babies.
Currently stuffed up her football shirt is a pink, fluffy elephant. I'm not sure which to address first, that humans don't give birth to elephants. Or that she may not have a tummy baby at all.

Right back to little G and those bacon sarnies. Wiping her snot off of the window pane of the back door should be on her chart. Next job on my list instead....

Next entry amidst or post the June appointment frenzy!

Have you been standing in compost?

No we haven't.  Yes we're tall, and yes we've grown.
I very much doubt Grace will ever be greeted by such comments from distant relatives. She did however leave her endocrine consultant in a state of disbelief after her measurements were taken last week. Grace has grown 5.5cm in 6 months and a whopping 12cm in the past year. To put that into context for you, an average toddler should grow 5-8cm in a year. Maybe it was the compost??

What does that mean for us? Delaying growth hormone injections for at least another 12 months. If you know how petrified G is of anything medical, you'll understand what a relief that is for us. For now.
On a less positive note,  it's time for Grace's 12-24 month blood tests. Eeeek. A medley of tests including a fasting glucose test. Try explaining no milk, no breakfast, visiting her least favourite place AND being pricked like a pin cushion to a 2 and a half year old. Can't wait.

Our 3 month opthalmology appointment was last week too, and something amazing happened - Grace didn't cry.....until the waiting room. At this rate we'll make it into the consultation room without tears by around age 5!
We made it through half of the tests before G lost interest and we've now established that she can see straight and that her eyes are working in unison (yes it really did take three eye appointments to establish that!). What it only took one appointment to discover was that 1 manky tiger toy lurking in the depths of a consultant's pencil case + a toddler who shoves everything in her mouth = horrendous diarrhea.
Next stop, testing each eye independently and the dreaded dye in the eye. Without said tiger.

As always, we are in hysterics on a regular basis due to Gracie-isms. Finger wagging, stern tellings off, and the adoption of mummy and daddy's key phrases make for some hilarious outbursts.
No mummy we don't have a deal.....stop fussing, you just keep fussing. ....be careful don't break it, it's delicate and you must be gentle....Ninnie it's ok,  don't cry, I'll look after you. .... hey you guys......I know it's not raining here but it's probably raining in our garden so I can use my new brella!

In other news we had a fantastic holiday in Norfolk, just what the Doctor ordered. Minus the rain. I think the Dr may need to prescribe a second holiday for my dad though, who did not get a minutes peace. Grace was his shadow all week. She adores her Grandan :) Squashing sandcastles with her derriere, and trying to win minion memorabilia in the arcades were the highlights of the week. Lots of fun was had by all.

Mental note, must purchase a range rover and speedboat before we return to that glorious part of the country. ..