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. 

Lockdown!

Welcome to week 10 of lockdown in our household! G is in her element (namely NOT at school), I have realised I’m better at teaching a class of 30 than my own 7 year old, and H just wants to go to the farm to see his friends!

How is G coping in lockdown?
SHE LOVES IT! She really doesn’t like school, has massive anxieties and her sleep is greatly affected when she’s at school. Since lockdown began she’s been asleep by 8:30 most nights-MIRACLE..... she doesn’t come downstairs a gazillion times each evening, and I don’t have huge meltdowns getting her out of the door in the mornings. That said, she is a nightmare to teach!! Some days we are lucky to get 30 minutes done. As maths is her weakest subject, and my primary teaching specialism, maths is our main aim. 5 days a week of 1-2-1 maths for 15/20 minutes and I’m happy. Sometimes we get some writing and reading done, maybe even spellings (not all on the same day though!).

As for the rest, we do gardening, cooking, painting, growing vegetables, woodland walks, woodwork, art, gymnastics, singing, bashing the piano, applying for Blue Peter badges and lots more. Not in a bragging way, in a ‘this is what we’d normally do’ way. And don’t be fooled, inbetween each and every one of those activities is bickering, fighting, talking back, screen time, more bickering, bossing around and general sass!! Oh, and I’M HUNGRY more times than I can count. I’m sure the food bill has doubled!

What have we missed?
G had a fair few appointments scheduled this past few months, so we instead had 1 rescheduled (ears), and 2 phone appointments. One phone appointment replaced G’s annual heart scan, NOT ideal, but couldn’t be helped. We usually make a fairly lengthy journey to Oxford John Radcliffe for her heart checks, but a phone appointment to check nothing untoward is happening resulted in a rescheduling for October. October is looking fairly busy now-Ears, Heart, a rearranged birthday present to watch one of G’s favourite kids bands, a holiday (we hope!), a wedding and an endocrine paediatric appointment.

The other phone appointment was our long awaited-14 months-with the community paediatric consultant to discuss G’s traits of Autism and ADHD. The phone call with a rather upset consultant revealed that we literally had fallen off their radar and we need to start the whole process again. AGGHHHHHHHH! She was incredibly apologetic, and herself disappointed in the process, but I guess at least we are on the right track again.

We’ve also missed several weddings and hen dos,  a few mini breaks including to G’s favourite caravan site, and a number of birthdays and celebrations. But it’s ok. We’re ok. Some days we’re amazing. Some days we’re not, but that’s normal right? Totally. We have each other, and health. We have loving family and incredible neighbours. Talk about community spirit! I’m even managing church online and recording the odd bit of piano when I can. It’s good, it’s positive. And when it’s not that’s ok too.

So, to continued lockdown, to a few more muted birthday celebrations, but also perhaps even to a little bit of normality again soon...... 

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!! 

We’ll be grommet friends!!

Knowing that one of her besties has grommets has perhaps made the prospect of needing grommets herself, a little more palatable. By a little more, I’d say she’s possibly 0.5% happy about it as opposed to 0%....

Last week’s Ear, Nose & Throat appointment (along with a 3 monthly hearing test), revealed quite a decline in G’s hearing in her left ear. She’s gone from her hearing only being affected at one pitch to all pitches being affected by the fluid behind her eardrum. We’d noticed a decline in her general hearing anyway so this news didn’t come as a great shock. Final decision appointment in June, with a strong likelihood of an operation for a single grommet being planned soon after. Unless a miracle occurs.

On a brighter note, G’s paediatric endocrine appointment was incredibly positive-she’s grown by around 7.5cm in 12 months (with 4-8cm annual growth deemed as ‘normal’), so yet again G is smashing it with her daily growth hormone injections!! We were told that her dosage could be increased again but this statement was swiftly retracted when the consultant looked at her growth factors in her recent boodwork and noticed that G’s IGF1 levels were almost exceeding the upper limits.
So Two years on the magic growing juice and G is doing phenomenally! I had to buy her some new clothing last week as we’d realised She had been wearing age 3-4 in some garments for as long as we can remember, and the tightness of the waistband was triggering her sensory processing issues. Age 6 clothing swiftly purchased! Thank goodness for click and collect.

The rest of G’s blood work results were normal, which also indicated that her constant tummy aches can only really be attributed to anxiety. Thus a refferal is being made by the paediatrician, to a psychologist.
I’m incredibly passionate about mental health, and the sooner we can put some coping strategies in place for our babe, the more confident we all will be about how she will be able to handle what life throws at her.

In other news:

Anxiety- G has come to the end of a short programme at school, based on a book called WHEN MY WORRIES GET TOO BIG, which has helped her to start to understand her emotions and how her body feels. Learning to recognise emotions, your body’s reactions and then how to cope, are such tricky concepts to get to grips with. So putting that info all together and working out what on Earth is going on can be perplexing for young children. They can struggle to know how to react. The ‘go to’ reaction for many youngsters may simply be having tummy ache and not wanting to go to bed. It’s an ongoing process (it still is for me), but we’ll take every little bit of support and advice we can get.

Blood pressure monitoring-the cuff did fit! The monitor did work! Hurrah! However by around hour 16 of 24, G became overwhelmed:the cuff was tight, and itchy, and kept inflating, and irritating. We removed it half an hour short of the 24 hours as she was in a massive meltdown. But my goodness did she do a fantastic job of holding herself together for so long. The results are unknown to us as yet, but ironically the school theatre production (G’s worst nightmare) was on during the 24 hour monitoring which could have meant the results made for interesting reading. Thankfully she was excused from the event due to the severe anxiety it was causing. I think the monitor would have gone into overdrive with her blood pressure spikes, and after signing a £2000 waiver stating we’d replace the monitor if G broke it, we weren’t taking any risks!

Holidays are coming....
Someone is rather excited for a day beside the sea (and that’s just me!). I’m busy filling up our two week planner just so that we can ensure some sort of routine over Easter. Hopefully the tummy aches will ease, bedtimes will be a tad easier and lots of fun will be had.

School isn’t all bad though (despite much protesting from our lady) - her reading is coming on leaps and bounds, in class this morning she was sharing her new knowledge of o’clock and half past with me, and she has an upcoming school tea party for which she’s going to be baking scones. Glad I’ve got an invite!

We were also reflecting on how far G has come with her swimming. Bearing in mind it wasn’t many moons ago that she’d still scream upon entering the poolside area, it’s rather amazing that she now looks forward to swimming each week. Last month she gained her 5metre badge, and she’s now desperate to complete her final few tasks before moving to.....THE DEEP END.... (don’t panic mummy, don’t panic). What a huge achievement for our girl! It’s taken a shed load of perseverance, often on our part, but has definitely been worth it.

Oh and our not so little girl turned 6, and what cake did she request Daddy make?

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! 

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...

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!!!!!! 

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

Tomorrow marks the first day of...

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

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

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

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

In other news:

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

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

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

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!

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!

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

Which way is up?!

'I am your biggest fan,  I hope you know I am, but won't you just slow down...'
We are thinking about schools. Big girl schools. My girl isn't big-she's my little girl! Please slow down...

What a whirlwind of a few weeks-4 hospital appointments, 1 emergency booster jab, 1 short admission to hospital and lots more visits to the bathroom. That said, we are happy, healthy and thankful xx

Ear Nose and Throat appointment
I forgot to mention that Grace had a nasal swab at her ENT appointment. I thought it was a redundant detail.  Not so...

Brief spell in hospital
After 3 solid weeks of the squits  (there's no nice way of discussing diarhhea!), the doctor sent us to our local hospital assessment unit. He feared dehydration and felt that 3 weeks was quite long enough!
Six hours later we were discharged with strong antibiotics and a diagnosis of secondary gastroenteritis, caused by a bacteria known as strep pneumoniae residing in her nasal canal. This non-symptomatic bacteria was not a nice one. Turned out that nasal swab wasn't so redundant after all!

Endocrine appointment
G has grown 3.6cm in 4 months, woop woop! The paeditraican reduced our 4 monthly visits to 6 monthly with the view that G would hit her annual target of 5-8cm growth.
(To our dismay, when we returned home and checked our notes, we found that G had only grown 3.8cm in nearly 11 months. It doesn't look like she is on target...)

The paeditraician was happy with G in general-her bone age scans came back fairly normal, as did her bloods.

One surprise result was that her childhood phneumoccocal vaccination had been unsuccessful.  For 3 years we'd thought she had been protected against meningitis C, and she wasn't! I had faught for the meningitis B jab to help protect against as many strains as possible. Little did I know it was possible that her  body had not built up the antibodies after her baby jabs. Cue the emergency booster and a form for repeat bloods to check for antibodies.  I'm so thankful for vaccinations, and our NHS!

Gastro appointment
G has officially been discharged by the gastro team. Woop woop! One less appointment every 4-6 months.

Dietician
G's tummy issues will now solely be under the care of the dietician. Once her digestive system has settled after the gastroenteritis, it's time to start that dreaded dairy trial again. Perfect summer holiday gap task!!

Sleep solutions?
Have we any? We are close to being signed off due to her sleep improving, but I use the term loosely.

So that's us up to date. Time to run- church house group. I've a lot to be thankful for!

Fitting in

Watching a programme the other night about a children's hospital,  one of the doctors verbalised what many parents think, whether we admit it or not is a different matter but I'm sure many think it at some point. Especially us mothers of children who were diagnosed with a Syndrome or condition whilst in utero. I did. More than once....'I hope that my child will be normal.'

I beat myself up about this thought many a time. How awful must I be to care about how my child looks or acts. Of course I'd love her regardless. But I didn't mean it from a superficial point of view. And what is normal anyway?? You see it's because we as parents want the best. We want our children to have the best chances in life, to face as few obstacles as possible. To have the easiest ride in life.
But I realised it didn't matter. The day she finally arrived by the skin of her teeth, so close to not arriving, I didn't care less what she looked like, or what she'd become. It's the love that we surrounded her with that mattered. The strength, resiliance and confidence that we instilled in her. But love, that matters the most.

As for easy rides, it doesn't matter how clever you are or how you behave or what job you have or what you believe in. People can be nasty ass regardless. I know that from experience.
It's how you deal with it that matters.
As it stands we have one feisty little babe on our hands anyway. That and the prayers of her over-protective, over-anxious, ridiculously proud mother. And some.

Tummy troubles
We just cannot get to the bottom of G's tummy troubles. Bottom being the key word. 17 days and counting.  Several days of jiggling childcare, several missed preschool sessions (much to her disgust) and the over familiarity of many many bathrooms! Thank goodness for the newly decorated downstairs toilet...I've been rehearsing in my head what the sheet music wallpaper would sound like.

We have a gastro appointment in just over a week and we really hope they can shed some light. I'm also keeping a food diary to see if the dietician can spot any patterns.  Though a dairy free, gluten free diet is fairly gentle on the old digestive system anyway,  so who knows?!

So you won't try and discharge us?
Finally we have found an ear nose and throat consultant who doesn't dismiss our worries, or more to the point the very real impact of Turner Syndrome on our girl's ears/hearing.
Thankfully for now G has perfect hearing, no fluid behind her drums and has been infection free for 4 months. 
We've been promised annual screening until at least 16, and should or when the infections resurface, they will see us more frequently.
Six months of antibiotics will be prescribed this coming winter also. Downside....her poor gut will take a further bashing :(

The beauty of the NHS
G received her second meningitis B jab recently.  I know this a sore subject for many families, rightly so. But I just have to be thankful that her poorliness qualifies her (at our doctors in our county at least) for another potentially life saving jab.

Next week we have growth discussions with her paediatrician at our endocrinology appointment, and the week after is the much anticipated gastroenterology appointment.  In the meantime I need to crack on with school reports. The past few weeks have reminded me that being a working mummy to a girl who doesn't have the best track record with good health can be a tough one.
Wouldn't change a thing though. Love you G!  

Ps...G's current favourite phrase- I ABSOLUTELY like that. And game-school assemblies. Haha!

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. ..