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!! 

The Chase

Sometimes life can feel a little bit like you're on a treadmill, struggling to keep up. That feeling of constantly chasing. I've had that this past month. 
When you're the parent of a child that has a condition that isn't common, and thus doesn't always have a huge amount of knowledge or info out in the pubic domain, YOU become the expert. You become the one chasing for this and pushing for that.

Generally, a vast amount of G's care runs like clockwork...her Ear, Nose and Throat clinic send us a new appointment within a week of her most recent appointment, as do her Opthalmology clinic, her eye consultant, her general paeditrician and usually her endocrine consultants for her growth.
HOWEVER, anything extra, anything that has cropped up or anything that may not be on the radar of her current consultants, can result in me constantly needing to chase people.

Currently I have been needing to chase a 24 hour blood pressure monitor since G's blood pressure was consistently higher than average back in March/April/May of LAST YEAR. Last year! 5 year olds don't generally struggle with high blood pressure, but 5 year olds with Turner Syndrome can...meaning I have needed to chase.

G's heart check is due in March. Usually we have the appointment months in advance as a consultant from a specialist hospital travels up to run the clinic. But no appointment. Most 5 year olds don't need a heart check, but a 5 year old with Turner Syndrome does. G's checks are currently annual as although one heart condition rectified itself (hallelujah!), a slight abnormaility was noted last year. An abnormailty which needs regular checks. Thus I have needed to chase.

And as for the ugly monster that is anxiety, my goodness we can't seem to get the better of that yet.
THANKFULLY after several phonecalls, voicemails and a plea to various other paeditrician's sececretaries to get someone - ANYONE -to get in touch with me, I finally got a call to discuss our concerns. Our paeditrician is great, she will generally follow my lead and will do anything for us. It just sometimes has to be MY lead. So:

1. 24 hour blood pressure monitor booked (it best work this time!).
2. Cardiac consultant contacted to chase up the heartscan/echo.
3. Referral made to community paediatrician regarding anxiety, and also various traits which G displays.

I also put a plea in to school regarding G's anxiety, and many other 'little' things which actually all add together and on some days can become overwhelming for little G. We are hoping these will be addressed with time, but knowing the education system myself I do know that it may not be imminently due to budgets and other constraints. On the radar at least. 

Gosh, my head has felt like it has been ready to explode. It usually does - that meme that is doing the rounds on social media rings true: my mind is like my internet browser - I've got 18 tabs open, 4 of them are frozen and I have no idea where that music is coming from! 

So how is our beautiful G?

She is good! Growing so well thanks to the magic growing juice. I'm constantly on ebay getting bigger clothes.

Feb and March are pretty heavy in terms of of hospital appointments, but that's the norm for us.

 Our brave babe finally had THAT blood test, and thankfully the results came back as normal.

Tummy aches are a huge problem at the moment, but we are likely looking at it now as a physical manifestation of anxiety. 

She still adores little H, they are thick as thieves sometimes. Especially the time they both drew all over G's bedsheet in green pen..., 

Yes we have our ups and downs, our major meltdowns, but actually that is also the norm for us. 

Nobody need judge their lives on what is the norm for others. Everyone's normal is different <3

Holidays, heat and hospitals!

Well I think I blinked and missed July! Thankfully we didn’t blink and miss the British summer this year...our holiday to Cornwall was a scorcher for the first time EVER.

Much of the summer holidays have been spent in the garden under the shade of our homemade sail-style canopy (think bed linen on the washing line come strewn across the garden due to high winds and you’re about there). They’ve also been spent trying to keep up with little H’s antics as he enters the world of walking, and generally attempting EVERYTHING that is mischievous/heart-attack inducing.

With only two weeks of the school holidays remaining, we’re now turning our thoughts to ridiculously priced School shoes, first day back anxieties, and the two main men in our lives both having operations this bank holiday weekend. EEEEK!

News news news...

- G is being monitored for high blood pressure. Now we’ve always had problems with blood pressure montior cuffs fitting G. I know this. I anticipated this. I rang ahead and checked this. ‘Don’t worry, we’re all prepared’ they said.
No. Twenty five minutes of tears and the cardiac investigations team concluded G would not be able to go home with a working blood pressure monitor. I almost wanted to mutter ‘I told you so’ on my way out, but the screams of both children had me otherwise engaged.

- Today’s three monthly Ear Nose and Throat appointment revealed what we’d been expecting but dreading: G is now experiencing hearing loss, and grommets are imminent. She’s been on antibiotics for 3 months but with no positive impact. Thankfully the results from her pressure test (testing for fluid behind the ear drums) have given us a 10-12 week reprieve.

- Last month G got glasses! She’s been desperate to have her very own pair for months, though the excitement has worn off somewhat. Back to the opthalmologist and consultant in three months to assess the impact. It’s all about the three months at the moment!

- So I told the babe she needed a repeat blood test. Most days she asks when this will be. September babe, ages away. Not in her mind. Bless her and her anxiety! Her next endocrine appointment is in October so we’ll be booking in with the play specialist just ahead of that. Let’s hope the blood doesn’t clot this time.

- Bank holidays....an extra day’s lay-in, Sunday evening at the local, maybe even a mini break? Or perhaps the littlest boy having an operation, closely followed by Daddy having one three days later. Little H is having straightforward surgery to find a missing piece of his male anatomy, and Daddy is having slightly more complicated surgery to remove a whole disc from his spine. Gulp. A fairly swift recovery for little H, not so for Daddy. GULP. No work for some time, no driving for some more time, and no picking up the babes for a long time. We LOVE you. Prayers much appreciated <3

- Amidst the chaos this weekend, me and my wonderful hubster do have the rare treat of a belated Christmas present to a beautiful outdoor theatre. Thanks Mum & Dad!!

So that’s us all up to date! We’re officially on the countdown to school resuming (my ex-teacher self would never have celebrated this!), also to the Turner Syndrome Annual conference in October, and of course to making it to the other side of this bank holiday weekend...