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! 

Sleep, school and screaming

Considering I’ve been up since 4am this morning, sleep is somewhat misleading as a title! Since returning to school, the implications on G’s sleep have been two fold-sometimes she’s totally exhausted and once she’s asleep she’s out for the count... but....the school induced anxiety/overactive brain gives rise to a buzzing babe who is often up until gone 9pm and wide awake by 4am. Throw her little brother into the mix (he  seems to have inherited G’s crazy sleep patterns) and it’s a sure fire recipe for 8am meltdowns. Right in time for the school run. Hurrah....

So I spent much of the summer holidays looking forward to the routine and stability of the new School term. Routine and stability are VITAL for G. Only what I’d forgotten to factor into the equation is her dislike of school. The epic morning meltdowns. The after school meltdowns. The going to bed each night promising myself I’d handle tomorrow’s meltdown better, make her happier, ensure she didn’t go to school thoroughly exhausted from her emotional outbursts. I then spend every journey home from said School run trying to analyse just exactly where it had all gone wrong. Again. I also try to remind myself that she can’t help it, it’s her ‘internal wiring’.   

I know it’s all change, and G can’t cope with change. The transition to year 1 is a biggie. But equally I know that this won’t be the temporary new class blues that many children experience. This is us. Every. Day. Now don’t get me wrong-she isn’t badly behaved at school, or in floods of tears all day, or sat in the corner alone and unhappy. For her is more the angst of going, and her fear of missing out  with mummy and H at home. And the  upshot to G’s emotional side-she’s incredibly loving and caring. I ADORE  that about her.  It’s just working out how to cope with the meltdowns.

So with that in mind, we’re seeking support from her new teachers along with a specialist service offered by the local council (a branch of what used to be autism outreach support) to try and bring about some positive changes in our mornings. Watch this space!

The start of this academic year was a somewhat bizzare one for me, I wasn’t preparing for a return to school myself. Two maternity leaves aside, this is the first year in ten years that I haven’t been back at school myself. Emotionally I’m far better off for it, stress wise too (my head is full to bursting most days-minutes-seconds anyway!), but I do miss it just a tad. My bank balancing is probably missing it more though.

What does the next month hold for us?

October = annual Turner Syndrome conference!! I cannot tell you how excited I am! Every year I say it-the place where acceptance, love and understanding comes in bucket loads. Where information, knowledge, and medical support is simply second to none. Every knows, everyone has ‘been there’, everyone is simply amazing. 

October also sees G return to the ophthalmologist to assess the impact of her new glasses. It also sees our bi-annual visit to the paediatrician/endocrinologist. 

Tomorrow = G’s repeat bloods. Ahhhhhhh! I feel for her, she’s terrified. Love, treats, hugs and more love on the cards for G tomorrow. 

And of course, a much needed half term for G. Yes it will bring a whole new set of challenges but equally it will be fantastic to see the element of school anxiety melt away for a few days for my girl. Where she can be where she loves to be-at home and happy. 

Boys, boys, boys

Thank you for all of your love and prayers over the past four weeks. H is Fully recovered. The operation didn’t quite go to plan but he’s none the wiser (for a fair few years at least). Daddy is also healing nicely-his disc removal was a success. He’s due at the physiotherapist this week, and the specialist in two weeks, and hopes to return to work full time in the next few weeks also. Daddy’s beyond bored, hating my driving, and missing lifting up his babes, but overall his recovery has been incredible. 

That’s us, I think! Bedtime yet?

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

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. ..