Christmas greetings, germs and gratitudes

Christmas wishes coming to you, from our local walk in centre.....

Yet again we are thanking our lucky stars for the NHS-double ear infection for G, diagnosed and sent on our way with antibiotics by 9am on Christmas Eve. 

This past month or two has been chaotic. It’s predominantly been filled with illness - two ambulance trips for little H due to bronchiolitis and breathing difficulties, and for G, ear infections and crazy temperatures. She has also had a fainting episode, and several funny turns, leading us to believe that G’s dislike of anything (or anyone) medical may have escalated to the next stage. 

Illness aside, November and December have been fairly uneventful, especially with regards to Turner Syndrome.
Usually at this time of year I am mad busy with ‘all things christmassy’ at school, but currently being on maternity leave means I have  been able to partake in G’s school’s festivities. A trip to the theatre to see Stickman, Christmas open morning, and her first ever Nativity! 

Now I LOVE a good Nativity. But your own babe in her first ever Nativity...that’s something else. I think even daddy was fighting back a tear or two. Shepherd #3 in her tea towel headdress and her two spoken lines. My heart melted. 

I’m wracking my brains for other news, but seeing as it’s taken the best part of a day to write this, I think I will call it a night. Today we’ve enjoyed ice skating, a Christingle service, watching The Santa Claus movie, cooking the turkey and driving around spotting Christmas lights. Now I’m exhausted, G is beyond excited/feeling rotten and Daddy is busy preparing Christmas Dinner.

So goodnight all. Wherever you are and whatever your situation may be, we are sending you love this Christmas xxx

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

Anxiety

With today being world mental health day, I thought I'd share with you a commonality between myself and my daughter (and her Turner Syndrome).....ANXIETY.

Anxiety is like a little creature nestled away in the corner of your mind, ready to rear it's ugly head at any given moment. You don't need to be feeling down for anxiety to take hold. You don't need to be stressed or anxious for a panic attack to occur-I've had one snuggled up under a warm blanket with a hot cuppa watching Saturday night TV.

More often than not my mind is full to bursting. I joke that I cannot cram any more in, that my head hurts. But it's NOT a joke. It's reality. Every day.

Today it goes something like this....... school run stress-finding a parking space, not being late,  baby not fed as much as normal, will school call again about my big girl being upset?  Money worries, always money worries, leaving the house in time to make it to bible study, baby feeding on time so I can leave the house for school pick up, big girl's health, always worry about big girl's health, no job, money worries as no job, can't keep up with the washing, ironing hasn't been done in an age, big girl needs a photo for school of her playing sport, big girl's hospital appointments, not locking the front door, baby's sleep, baby's poops, giving baby enough stimulation, husband's job, my car breaking down, husbands happiness, everyone's happiness, cleaning the house, ordering big girl's injections, reading big girl's most recent report from her most recent assessment, leaving the iron on, the dog running away on a walk, worse still the dog being stolen, my mobile being cut off, after her assessment-doing the suggested activities and exercises with big girl, washing the bed clothes, writing my CV, writing this post and sharing my struggles.... and that's just a snippet of what is in my head right now.

And that is minus my irrational thoughts-the ones I often dare not share for fear of judgement. The 'what if?' thoughts.... what if someone kidnaps my children? What if I die today and leave my children without a mother, my husband without a wife?

Much of the worries seem trivial. The 'what ifs' are HIGHLY unlikely. But to a sufferer-one with panic anxiety disorder-it's ALL important. It's all pressing. It's all exhausting.
I try and ground myself sometimes-there are people starving, homeless, caught up in the horror that is war, genocide. But it doesn't work. I worry more!

I'm soooooo tired. But not just physically, mentally and emotionally too.

That feeling of being on a treadmill when you can't keep up and you might fall off at any time. Only you don't fall off as you find enough energy to keep up, you have enough love and happiness in your life to make you want to keep up.

Busy places, chaos, I can't deal with it. Big cities are a no no. Shopping centres are overwhelming. Even the small, enclosed concrete playground require a like it or lump it approach at pick up time. How my husband longs to take me away for a city theatre break, like we used to in our younger days. But the money and crowds and potential threats? And the kids, I CAN'T leave the kids overnight! How I'd LOVE to be anxiety free.

I worry for my big girl. Anxiety is a family trait, it is a Turner Syndrome trait. She worries so much already-about who will pick her up, about friendships, about her hospital appointments, about her school book being changed as she's already read it twice, about when the boiler was last checked!

So do me a favour....when someone opens up to you and says that they suffer with anxiety, don't dismiss it. Don't dismiss them. Anxiety is real, and it's far bigger and far more crippling than you may have ever imagined. Far more of your friends and family suffer than you probably realise.



P.S. With the above in mind, I'm ok.  I really am. I function perfectly well on a day to day basis and I've worked within what is known to be a very stressful profession for the last ten years. 99% of the time I know how to deal with my anxiety. I know how to keep it in check. And that 1% of the time I can't, I know who is there to help me. 

When did we last have our boiler checked?

Nope that wasn't a question from hubby to myself, or vica versa. It was infact the topic of conversation initiated by G during Sunday lunch this weekend!
I'm sure sometimes that she is four going on forty....

She also declared during one of our numerous car journeys that when people fall out they should just say sorry at exactly the same time and go back to being friends.
When did she get so grown up? So wise? So anxious about the state of our boiler!!
When she needs or wants something, such as a new car seat, she asks if we'll have enough money left over from daddy's wages. Even offering to use her own money. When did she become so thoughtful?

Often we forget that our mini babes are like sponges, they soak up everything around them. The good, the bad, and the rest.

I THINK I'D RATHER STAY AT HOME WITH YOU AND H TODAY....
Oh babe, school doesn't work like that, you can't just pick and choose!
Four weeks in and she's loving school. But she's shattered. She's caught every germ going, doesn't have the greatest attendance rate already and has even had a brief stint in hospital. It sure is knocking the stuffing out of her.

CONFERENCE TIME!!
It's nearly upon us, the annual visit to the best gig in town-the annual Turner Syndrome Support Society conference. I know I say it every year, but it's the one place I (as a TS mum) feel truly at home. We are looking forward to an action packed couple of days, though perhaps not so much looking forward to hours and hours on the M6 with a young baby.

APPOINTMENT UPDATE
So the eagerly awaited endocrine appointment to asses the impact of her growth hormone was, wait for it, cancelled. Hmm. Can't be helped I guess! Now to chase up a replacement appointment.

Physiotherapy was more successful-firstly it wasn't  cancelled, and secondly she doesn't need physio!! Her initial assessment led to some rather surprising results: no balance or coordination issues, good muscle tone, surprising physical strength and good body control. Who'd have thought? She's the clumsiest child going!

Tomorrow sees G attend an hour long occupational therapy assessment. A number of issues to be explored include:
Taste and texture, sensitivity to noise, sensitity to clothing and labels, fine motor skills, mini obsessions, need for routine.... the list is endless, and may amount to something, or nothing.

As always we are so blessed with the care we get from the NHS. Recently I saw a US Turner syndrome post regarding the cost of growth hormone in the US... nearly 26,000 dollars for ten months worth of hormone. MAN ALIVE how lucky we are to get the ESSENTIALS for our girls on the NHS. 

And on that note it's time for me and H to run-G's harvest festival service commences in 30 minutes and I'm a total stress head when it comes to school mum related activities (primarily getting there on time and parking!). 

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! 

After G comes H....

Just shy of three months ago, G finally became a big sister! A moment she's been waiting for for at least the past two years, and one that she has treasured every day since little H came along. She is well and truly in love, and a total mini mother in the making.

Life felt chaotic for much of the past few months, but we are slowly adjusting to life as four (sorry Black fur baby-life as 5!). G takes every opportunity to shower her baby brother with affection, to inspect the dirty nappies with a fine tooth comb and also to poke and prod her sleeping brother at the most crucial of moments....like when he's finally fallen asleep after what seems like hours of coaxing!
It's hard to imagine how life used to be, partly because my brain doesn't have the capacity to do much at the moment. But sometimes I do fondly remember the days when I wasn't yelling at G to shush, or telling her I couldn't play football right now because little H was feeding, or that she'd have to wait for a cug. Being a big sister comes with its set backs. I have learned to cug and feed, it's important for G to know that she is still adored.

Appointment updates:

Eyes: It seems that G may be heading towards becoming spectacle wearing babe. She's longed for glasses for some time, but the realisation that this may be a dream come true has resulted in it no longer being a dream of hers! Follow up appointment in November to ascertain whether her short-sightedness has indeed resulted in the need to wear glasses.

Community paediatrician: G's annual appointment was as always a positive experience. Our paediatrician is 100% understanding of our concerns, which currently include many aspects which sit under the umbrella of sensory processing disorder. When I'm a little less sleep deprived I will delve a little deeper into this but the general gist is that the nervous system doesn't necessarily receive messages form our senses in the correct manor and thus the body's response/behaviour to them is not as it should be/what we would expect. Currently we are awaiting a referral to both occupational health (for sensory processing disorder) and physio (for her clumsiness, and issues with fine motor skills). The paediatrician has included G's new school in her post-appointment report which hopefully paves the way for a positive and open relationship between ourselves, the health professionals and the school.

In other news...
G starts school in September! I cannot wait-mainly because she is so incredibly excited (and ready). But also because her teacher can answer the barrage of increasingly difficult questions that I face on a daily basis. Some of my favourites include- what's so flappy about flapjack? How much pollen do bees collect each day? Do geese get goose bumps? And the age old question of how daddy put baby H in my tummy...

The girl is growing! Hurrah for the ankle swinging joggers, the tight trainers and the fast becoming set of crop tops that once were t-shirts. (By the way babe-this is the only time in your life daddy will be likely to let you wear tops that show off your midriff!). We are due to see the endocrinologist in September to assess the impact of the first six months of growth hormone.

I'm sure there is so much more to share, but I'm frazzled. Little H has been asleep for the past hour and a half and I'll be kicking myself if I don't use this time wisely. Night all! 

Ps Thank you to everyone for your cards, gifts, delicious dinners, well wishes and prayers, especially during the time of my surgery with little H. It was a miracle that all went so smoothly given my complications.

Problematic platelets

I'm pretty sure that just over four years ago, I had a post with a similar title! Thankfully this title doesn't relate to our gorgeous little G, just me.

The past few weeks have been relatively uneventful for G...a snotty cold here, some more lack of sleep there, lots of loving cuddles with bump, farm visits, fun times at Pre-School, and a trip to BIG school. No medical appointments either for G, so that has been amazing. Just a routine trip to the dentist tomorrow.
Her injections are also going incredibly well. She really is a superstar and we've now trialled many scenarios including: injections without mummy; injections without daddy; and injections without a bath first. I dare not say we've nailed it, but we are over the moon at how she has adapted to life with daily growth hormone injections. The amount of bribery sweets being used, less happy!

Speaking of school - G's new big school have been incredible already. I have met with the deputy head and the SENCo, given them a one page profile of G and her Turner Syndrome, discussed potential issues that may arise, and planned a couple of familiarisation visits (outside of what they'd normally provide). What I love the MOST, is that they said they don't want to label her and look for problems, but equally they want to be informed enough that when an issue arises they can potentially attribute it to her TS (if it is relevant) and come to us to advice. Next stop, a transfer day, a parents information evening and a story visit. EEEK!
Also with regards to school, I've finally given in to the advice of the medical professionals and commenced maternity leave early. It was a bit of an anti-climax, it certainly wasn't how I had planned it, and I am missing my lovely village school very much. However I had to listen to those who know best. That's sometimes a bitter pill to swallow.

I'm sure you're all wondering about our imminent arrival....

Well baby boy  has been causing more than few sleepless nights! My platelet levels have now dropped lower than they did with G (and they were low), which coupled with a complication involving my placenta means that having low platelets and a poor ability to clot during/after my caesarean is far from ideal. Fairly dangerous infact. I'm in the process of having steroid injections to strengthen baby's lungs in preparation for him potentially being whipped out early, and very regular blood tests to trace my platelets. Trips to the hospital are more than frequent now and the car parking is extortionate!! Back again tomorrow.

As they say 'forewarned is forearmed', and the hospital have lots of procedures they can and will put in place on the day.  Not only that but lots of support from family, friends, church, along with an abundance of prayers have finally allowed me to be a little more at peace with all of these complications. G was a little miracle - our little 2%, we're in good hands again.

Signing off today as my last blog as a mum of one, my next post will be as a mum of two!!