How to walk down the stairs without making a sound.....

Starting from the landing, quietly but gently place your left foot on step 1 as close to the wall as possible. Place one hand on the  handrail and rest your free hand on the wall so to take the majority of your weight. In one swift, controlled move, place your right foot on step 4 (or 5 if you can manage it without breaking your leg).... all whilst holding your breath and repeatedly chanting 'please don't hear me please don't hear me' in your head!

Needless to say, G isn't sleeping too well still. It took her around 2/3 weeks to get over her multiple infections, and whilst we enjoyed 5 days of good health we did only manage two nights of sleep.As always, it was too good to last and she is full of cold now! 

G usually goes to bed pretty well, but when poorly she prefers me to 'sit by door' while she nods off. Her head bobs up every 2-3 minutes to check that I'm still keeping guard, but there comes a point when the breathing deepens and it's safe to start making a descent. That's the hard part. She seems to be able to hear a pin drop from a mile off, so my size 8's stomping down the stairs aren't easy to disguise!

'SPEAKING!!'

G is hilarious at the moment, I could just sit and listen to her all day. Her mannerisms and sayings are a mixture of mummy & daddy, with a few other key influences thrown in for good measure. 

'Hello.....speaking' she says assertively when answering her peppa pig phone, (with obligatory hand on hip).

'Ninne go wee wee' she orders Winston as he's shoved out of the back door.

'Bean time, fruit bar time, tuna time, egg time, home time' literally anything that she is remotely exciting about has the word time at the end! 

'Chocolate cake please, thank you' how is our child so incredibly polite?

'Daddy get off' she giggles as he tickles her relentlessly. I'm pretty sure he uses a few more expletives when we try and tickle him! 

'Mummy come back soon' she says sadly as I drop her off to the childminders, full of cold, having only woken 20 mins previously. Heart melts. Heart brakes. Hate being a working mummy sometimes.

How does our 21 month old have such a good memory? Such a wide range of vocabulary? Such a run of ill health the minute winter comes a knocking. Thankfully we have a whole host of people who regularly keep G in their prayers.

What's next for us?

•We have a gastro appointment on Tuesday, along with an appointment with the allergist/dietician. On my 'hot topics' list are:

-G's recent eczema outbreak

-G's awful bowels (still, 19 months after her 1st intolerance was discovered)

-Alternative milk options. Oat and soya are a definite no no, as were almond hazelnut and other varieties of nut. Nasty neocate formula forever?! 

•Tomorrow is designated decoration day. Given that she gave the asda Christmas display tree a thumbs down (infact it was a 'no like it'), I'm not sure how she'll take the Christmas make-over that we have planned for the lounge tomorrow. 

• 'Church time' in the morning. Yet another opportunity for me to chase her up the aisle and surgically remove her from the electrical items! That aside, a reminder of how amazing, how loved, and how miraculous she is.

Oooooo and I finally did it, after over a year of battling, we've finally got an Ear Nose and Throat referral. Don't mess with a mummy on a mission. She WILL win! 

'Poorly Soddige'

For someone who's immune system is supposedly 'normal', G sure is having her fair share of illnesses. I think she's getting our fair share too.

G really has been a poorly sausage. She hadn't been right for a good few weeks or so, and after four visits to our local GP (2 of which were for a very persistent facial rash), we ended up being sent to the paediatric ward of our local hospital. A temperature of 40degrees which neither antibiotics or calpol would touch, and the Dr was baffled. 

Friday night in the paediatric ward is somewhat different to Friday night in a&e.  Kitted out with toys, a television, some very pleasant nurses, and with only 1 other child in admission, it was a far cry from the drunken cattle market of a&e. Id go as far as saying it was quite pleasant. G on the other hand would not! She hadn't stopped screaming from the moment we arrived at the doctors at 5pm. Upon entry to the hospital car park, the pitch did go up a notch or two. Then when we finally walked in to the paed ward, G had settled for none other than an ear-piercing, glass-shattering shrill. 

'What toys does she like?' asked the play specialist politely. 'None when they're in a hospital' came my rather abrupt response. Shake shake, rattle rattle, 'grace, what's this...' She soon gave up! 

After poking, prodding, and an x ray, it turned out G had a chest infection on top of the already diagnosed ear infection and tonsillitis. 

I don't know about you, but any of those alone would have me curled up in bed in the foetal position!

By this point it was 10pm and the registrar wanted G hooked up to IV drips and to have a series of blood tests. Now at this point you may think we are crazy, but we chose to take her home. Her temperature had dropped, she had started drinking water, we'd been given strong antibiotics, and I knew that she'd continue to be distraught if we stayed. After some careful negotiation, and the promise that we'd return her ASAP if she deteriorated, we were finally on her way.

'See ya' she shouted merrily as we left the hospital near on midnight. 

Five days on, and G isn't that much better but her temperature is back at a consistent 37degrees. I've had several battles with guilt, as I'm sure every working mother does when their child is ill. 'Why am I doing this?!' I'd ask myself.

My working week is now over, plenty of mummy G time is on the cards, and possibly a further trip to the drs (don't tell her!). At the very least I want that Ear Nose & throat referral. The mystery rash has also spread and is looking more and more like eczema as the days pass by. 

She is also a shadow of her former self, as she always is when gets ill. Good job she likes cake so much!

Here's hoping and praying that she starts to improve soon. I'd happily take her place. 

Conference time!

TSSSConference2014

Wow, what a weekend, we are physically and emotionally exhausted! G is suffering the most out of all of us - she's lost her voice, caught a cold and is extra stroppy. Can't say that all my sympathies go out to her... she chose not to sleep ALL weekend. By not sleeping, I don't just mean the odd crap nap and a few wake ups, I mean she DIDN'T SLEEP. I guess I'm being a tad harsh though. G cannot cope with change at all, and we should have known that taking her somewhere unfamiliar with lots of new faces and without her best canine bud Winnie would be problematic to say the least. Sleep aside, we had an amazing weekend (including my parents who joined us), and have already booked our room for next year......minus G.

So what did we learn?

We were lucky enough to be able to attend seminars and workshops ran by some incredibly knowledgeable medical experts, including a Dr from Great Ormond Street Hospital and a professor from ULCH. Topics covered included glue ear, lymphoedema, general TS management, hormone therapy, and fertility.

But by far the most important advice came from parents themselves. People who have been there and done that.People who understand. People have fought the same battles we are currently fighting with medical professionals. People who 'get' G.  Each and every one of you and your girls are amazing.

The weekend was invaluable, and my head is still a swirling mess of emotions, plans, and questions. Having had a few days of turmoil, I've now had to devise an action plan to make sure that I focus on the here and now, and not the 'what ifs' and 'what might bes'. So, our action plan consists of......

1. Get G referred to an Ear Nose and Throat consultant - I will not let recurring ear infections lead to long term hearing loss, if I can help it.
2. Check if G does have lymphoedema, and get referred to a lymphoedema nurse.
3. Get G's melatonin levels checked. Those who are avid followers know our plight regarding G's sleep. She doesn't sleep. Most days we run on empty. How hubby runs a business, and I educate 32 children, I'll never know!

I also met a group of families who are fairly local to us, and hopefully in the coming months we will be setting up a friendship group to enable us to meet several times a year for support. I'm extremely excited about this!

Due to G's sleep issues, we did miss most of the 15th anniversary ball, which I am gutted about, especially the show. I hear the dads dance was a sight..... Maybe next year I can get hubby involved!

So, that is us and our weekend.  I am already excited about next year :)

Before I sign off, I have to say that our attendance at the conference would not have been possible were it not for two incredibly generous local charities who joined forces to cover the cost of the entire weekend for us.How humbled we were to receive your donations. In fact as I type this, I am also compiling a PowerPoint which I am presenting to one of the charities tomorrow night. The teacher in me has turned a short talk in to a 16 slide Presentation, complete with pictures. I'm not sure they know what they are letting themselves in for!

Ta has become....

.....'Thank you mummy'

'Sit' has become 'sit down daddy'

'All gone' has become 'empty, finished'

Her thin, whispy hair has become thick masses of golden curls

Her chubby little arms & legs, her little pot belly,  have become a tall, slender frame (how ironic that I consider her tall....)

A snatched 'cug' has become a longer lasting 'cug and kisses'

Our tiny baby has become a mind-blowingly articulate little girl, who can be so incredibly stubborn, and amazingly affectionate in equal measures.  

                         ~

I cannot wait to meet many more incredible Turner Syndrome girls, women and their families this weekend at our very first annual TS conference. So hopefully the nasty germs that had taken over our household have kindly done one....! 

Terrible tantrums and troublesome teeth

I'm almost certain I've written a post with a similar title at least once previously. The only difference being the horrendous diarrhea and nappy rash that have accompanied it this time....oooo I bet you really want to read on!

Explosions, in every sense of the word. Three canines have literally exploded through G's gums in the past 4 weeks. Alongside this there has been a nasty dribble rash, a red raw behind, and explosions of the ass variety! My sister had the pleasure of looking after G this morning, and boy did G make her work for it. Four vile nappies later, and Aunty S's an expert ;) 

Explosive could also describe her temper tantrums. Over the past few weeks I've had an array of comments regarding G and her fiery nature: 'Independent' 'strong willed' 'strong minded' 'fierce temper' 'quite a character'...... Guys I'm a teacher, I'm an expert at disguising what I really think behind an assortment of flowery wording. I know what you really mean!

Given that both myself and hubby are fairly placid, calm, and mild tempered (except when I NEED food), it has left us wondering whether that missing chromosome has any part to play in the make up of her character. 

With the Turner Sundrome conference less than 3 weeks away-maybe we'll find out sooner rather than later.

Appointment update

Last week I dragged G kicking and screaming, quite literally, to the hospital for an eye appointment. Whilst there are no current concerns regarding G's sight, it was felt that all bases should be covered due to her TS. I had rang beforehand to warn the opthalmist that G is terrified of hospitals, but she was adamant she'd be able to calm G down with toys, and conduct the whole eye test. HA HA HA HA HA. People really don't believe when I say she will scream from the minute we enter the hospital car park, until we leave. She doesn't even let up for air. Upon entering the car park, she initially tried to calm herself down by saying 'it's alright, it's alright' before descending in to hysterics. It's times like that I want to turn the car around, tell her it is alright, and go home.

Needless to say the eye test was abandoned (just like the ear test 3 weeks previous), but she'd seen enough to reassure us that G's eyes were in good condition. We are to return in February for a more in-depth eye inspection with the consultant. Deep joy!

So, that's us up to date. No more imminent appointments. G has been wowing us daily with her amazing vocabulary and understanding. She's now moved on to 2 and 3 word sentences, and is generally using her cleverness to try and outsmart me!! Love that little monkey :) 

And before I sign off.....I today found out that I passed my masters, woooooohooooooooo!! G even joined my celebrations this evening by saying 'whoop whoop'!

She rocks my world <3

Often I quite flippantly mention how G  screams down the hospital wards during  her appointments. What I don't mention is what a trooper she is, and how I totally don't blame her for sharing her disgust at being poked and prodded. She's clever enough to know!

Today whilst driving home from her hearing test (which I might add was one of the most traumatic appointments to date) I was thinking about just how amazing she really is. She rocks my world, and today I'm gona share why....

I love how she says 'okay' at the end of everything I say,

How she chooses sandals and socks,

And how she asks for a 'cug' every single day.

I love how she gives daddy a fist pump, and a hand shake,

How she tries to ride Winnie,

And how she pretends she's 'eep' when really she's awake.

I love how she likes to tidy, 'sweep sweep' & 'clean cleans'

How she likes to hold me tight,

And how she goes wild for toast and baked beans.

I love how much she loves numbers-1,2,3,4,6,8,10 she'll say,

How she's obsessed with her shed,

And how after she's finished eating, 'mummy mummy, play'.

I love how  she asks for 'reigns' and 'walk walk',

How she pushes her pushchair along,

And how much of a parrot she is- she really loves to talk. 

I guess what I'm trying to tell you all,

Is how much I love her so,

Our little miracle she is,

I just wanted you all to know....

Five foot what??!

We've had a busy few weeks with lots of check ups, bloods, and visits to various hospitals. Though of all of the appointments we've had, I think Tim was the most surprised to learn of some news regarding his height....

Gastro appointment 

A few weeks back G had her 6 monthly gastro check for her reflux. As with all appointments, she was on fine screaming form! Not only that but we were there for over two hours. Deep joy.

At home I'd managed to wean G's omeprezole medication down from 15mg, to 5mg daily, with very few side effects. This news was welcomed by G's consultant. We were told at our discretion to wean her down to every other day, with the long term view weaning her off them completely. I hate her being on medication, BUT they were a lifesaver when her reflux was at it's worst.

We mentioned some of our other concerns regarding G's general digestive system (this isn't the place to discuss the ins and outs of her horredous nappies!), and were then sent in the direction of the blood nurses. She needed an array of blood tests to check out her enzyme levels, to test for celiac disease, and any other general nasties! We plied G with cake, and tried the softly softly approach (along with an overzealous play specialist) but ended up pinning her to my chest until an adequate amount of blood was collected. 

We were also asked to provide a stool sample....Needless to say G did not adopt her 'all fours on the floor and strain' position.

Diet/allergy clinic 

Our visit to the dietician was relatively painless, screaming aside. We explained the failed milk trial, the every increasing list of food intolerances and the nasty poop issues. G was to be tested for some general household allergies, and we were to restart the milk trial at a much slower pace. Now by much slower pace, I mean painstakingly slow. A crumb of a homemade biscuit with 10g of real butter for 3 days, followed by an eighth of a biscuit for 3 days, then a quarter and so on. Once a whole biscuit was tolerated with no ill effects, up the butter content to 20g and repeat. AGHHHH! This milk trial will take us a good 6 months, and that's the baking alone. Still, like the dietician said, if she can get to a point where she can even tolerate milk and butter in cooked food, then that's a start. 

Feeding appointment 

A few weeks back we were due to visit hubby's favourite consultant, the feeding specialist. I say his  favourite because at the first appointment she virtually accused us of being bad parents for adopting the baby led weaning approach. 'She'll choke!' ..... 'Ok then love but she chokes on purées, and even her own saliva, so what do you suggest?!'

Luckily for him, I managed to convert this appointment into a telephone appointment. After an update on G's feeding, and also her speech, I was greeted with 'wows' and 'you're doing a great job' topped off with  'I think we can discharge G'. Result! 

Endocrine appointment

Today was the first of many appointments which will monitor G's height. Later in her primary school years, this team will more than likely be responsible for overseeing G's puberty-inducing hormones as well. 

We began by being measured ourselves so that they could calculate G's potential height had she not had Turner Syndrome. My 5ft 9, crossed with Tim's 5ft 6, would have left G with a range of 5ft to 5ft 6. That being said, 4ft 4 to 4ft 10 is a more realistic range for a woman with TS. So, her height will be monitored throughout her childhood, and the minute she drops below the 9th centile (which is where she'd need to be to hit 5ft) then we will begin the process of growth hormones. It is extremely likely that this will happen between the age of 2 and 3 years.

We know little more about the process of administering growth hormones other than the fact that she'll require daily injections for numerous years.

Oh and hubby's news? He's been robbed of an inch. So much for 5 ft 7!! 

So, that's our recent update. We've a few more appointments this summer, not least the dreaded ear test that we've had to postpone several times due to various illnesses. We also need to await the results of her bloods, and her stool samples (once the hospital relocate them....).

Ooo and to top it all off, G has discovered her love of Sleep (with the aid of a reduction in a 'sleep disturbing' medication)! Well I say love of sleep, for at least 4 nights out of 7, and until about 5:30am.....