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! 

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...