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 💗

Santa is dairy free!

When we visited Santa in his Christmas barn several weeks ago, the one thing that stuck in G's mind was Santa saying he was lactose free and thus wanting a dairy free chocolate cake as opposed to a mince pie this Christmas. 

I think G was secretly chuffed to find someone else with similar food intolerances. We still don't know if her issues with gluten are caused by coeliac disease, which is linked to Turner Syndrome. I'm not brave enough to feed her gluten every single day for 6 whole weeks!
She told me the other day that she would like to open a gluten and dairy free restaurant where she could eat everything on the menu. I'll be her first customer...

G has been having ongoing tummy trouble, and since she's no longer under a dietician or gastroenterologist, I took her to our GP - six months plus of daily tummy woes is quite long enough. He's concluded that, once some bloods have been taken (AGHHHH) just to cover all bases, it is most likely to be 'anxious tummy' 'reflux/heartburn' or a mixture of the two. So once I muster up the courage to take her to the hospital for what is now SEVERAL sets of bloods, we will hopefully know more. And at the very least try her on some reflux medication.

In other news:

SCHOOL NATIVITY: Well I never, did you ever hear of aliens at the nativity?! Little G stood proudly on the stage at this year's school nativity and recited her multiple sets of lines whilst doing her best alien impression. This babe has taken 4 years to stand on the stage at the annual Turner Syndrome show WITHOUT bursting in to tears, running off, or point blank refusing to join in with one dance. So we were incredibly surprised at her willingness to partake, and her confidence. We were beaming with joy as we watched alien number two...

WINTER GERMS: G was doing so well with no ear infections and just a streaming nose (nothing new there). So when she started having temperature spikes of 40 degrees in the penultimate week of term, we knew she was ready to crash. One dress rehearsal, two performances, one panto, two sending homes, a fainting and vomiting episode and lots of scary temperature spikes later, and G was done. We called time on school two days early as our poor girl was exhausted and drained. She's still not right, but at least we have another 8 days of not having to rush up and out to school. Whether her low immune system is linked to her Turner Syndrome, I'm not sure, but this year we've had a slightly better run up to Christmas than normal. I'll take that!

SCHOOL PANTO: She went! She was determined to go. I so wanted to be there with her. I KNEW she wouldn't cope. That the lights, the sound, the worry, the potential of 'baddies' would be too overwhelming. And it was... However for what it was worth, her teacher got her through. She was in tears for quite some time, and wanted to leave, but they pushed her through. G has since talked about the panto - the bits she enjoyed, and even getting her little brother to re-enact some of the boos and hisses. But that said, she's already told me that she won't be going next year. And nor will I make her.

ANXIETY: When G told me that on Friday's she had been sending her friends in to the playground to look for a boy who had once, on a Friday, pulled her glasses off her face and thrown them on to the floor, I knew she was struggling with her anxiety. When she started getting upset from Wednesday night onwards, not falling asleep until gone 9/10pm and having epic morning meltdowns (more so than normal). I knew we needed to do something. This one incident at school is not the sole cause of her anxiety, she has anxiety about many things (not being with me and her brother during the day, having to sit still during phonics, going to swimming), but it reminded me that she doesn't have five year old levels of anxiety. Her levels are FAR, far greater.

Now I am on a mission to get some support for her. Starting with school, and her paediatrician. Anxiety is associated with Turner Syndrome, and it's a trait of both mine and her dad so she almost has a triple whammy (sorry babe!).  But we'll do our absolute best to help her. Calming music, a fibre optic light and a lava lamp are currently being trialled at bedtime. She was asleep by 8:15pm this evening :)

So, apart from still having not taken her for THAT blood test, that is us.
Hoping you have had a joyful Christmas, and wishing you a peaceful New Year full of love and kindness.

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!!!!!! 

Has Father Santa Clause been?

G has been bursting with the joy of Christmas this December. That is on the days when she hasn't been ill...hmm...  G has been ill this December!

We've frequented the out of hours, our local surgery, and the walk in centre due to numerous infections. Throat and ears, but ears mainly.
To combat the ongoing problem G was upgraded from banana medicine to some horrendous tasting, vomit inducing antibiotics which ended up doing more harm than good. So four days before Christmas on the advice of the Doctor, we went cold turkey.
She is still riddled with cold, but her ears appear to have relented for now.

Christmas
We had a fantastic Christmas day. Love, family, food, sharing, giving, happiness. Though tantrums were two a penny. But I guess for a toddler who is a stickler for routine,  and has a tummy as delicate as a flower, she was bound to go a little crazy with the food and gift frenzy! Routine was restored at bedtime,  and she slept like a log (almost) for the first time in weeks.
Aswell as G receiving some lovely gifts, I received a truly thoughtful gift this year. My amazing husband combined my love of writing this blog, and my dream of becoming an author to create my very own hardback copy of Short 'n' Sweet, volume 1. Seeing G's story in print, hundreds of pages of print, reminded me of what an inspirational little girl we have. A beautiful God-given child who has defied the odds.

The A word
Four appointments in the forthcoming weeks. Ears-old consultant, eyes, more in-depth eyes, and ears-new consultant. Four appointments that involve physical contact. Habitual utterings of  'Don't worry they're just talking to mummy about you, they won't touch you' will be null and void!

So for us now,  back to thank you cards and playing hairdressers/babies and mummies/Fireman Sam, just like any other 2 year old. Only, one that's missing a tiny little chromosome.

Wishing you all love and peace for 2016