Playdoh sniffing.....

......Nappy filling

Calpol loving

Crisp stealing

Scooter riding

Park playing

Peppa adoring

Puddle jumping

Chocolate brownie munching

Cug giving 

...... Beautiful, chatty little girl! 

'I need you' is her newest phrase. Sometimes it's adorable. Other times? Well at other times I need to remind myself that it is adorable! 

Two weeks ago we visited the gastro consultant and dietician, who are incredibly pleased with her progress. She's reflux free (apart from when unwell...which would be a lot?!), and is motoring through her soya trial. We've conquered soya yogurts and lastly need to test actual soya milk. Getting her to try the stuff might be the hardest part! 

We're currently enjoying the Easter holidays. Most days we are up to our armpits in playdoh, and have permanent requests for ice pops, the park and her scooter. A trip to the country fayre was a welcome treat on bank holiday Monday. G loved the freedom, hated the birds of prey, and cheered on the show dogs. 'Well done doggy you got your treat' she'd shout at the gun dogs during the retrieving trials. Hehe! 

I'm desperately trying to prolong the Easter holidays, and to forget that I go back to work next week :( Mind you I need the wages to afford the amount of ice pops and playdoh this girl is going through! 

Quiz night triumph!

Never shall I blog again about 3 nights sleep in a row!! Molars cutting through, a soya trial and general 'G-ness' has resulted in a fair few sleepless nights recently. 

However, I'm still riding high on the success of our first ever charity quiz night - £1070 and counting....

We have an enormous amount of gratitude for those of you who contributed, in whatever format. We were truly overwhelmed by the amount of people who showed us their support. You lovely lovely bunch!! The Turner Syndrome Society will be ecstatic with the funds and I can assure you 100% that it will be put to good use. 

In other news:

-G turned two! Where has the time gone? She had a superb day, was totally spoilt, and stuffed her face full of peppa pig cake. Daddy will need to up his game next year on the cake front....

- We're in the middle of an appointment frenzy at the moment, much to G's distress. The best news came from our endocrinologist who informed us that G's growth appears to have accelerated over the past 6 months. 7cm!! We know that this won't be the case for much longer, but the older she is before we start the daily ritual of hormone injections, the more we hope that she'll be able to comprehend it, and thus not fight it. 

Tuesday sees us back with the Gastro consultant and Dietician. Let's hope the Pedro Pony weeble we've bought will soften the blow for G.

-We've always known G is somewhat of a Jealous Josh, but the recent arrival  of babies in the Chapman family have demonstrated to us just how much G would not like a baby brother or sister just yet. Good job really! 

G is continuing to entertain us, keep us on our toes and talk the hind legs off a donkey. But above all, she continues to amaze us. Her memory, her speech; her affection; her stubbornness; her little obsessions (she's desperate to go to centre parcs); and her uniqueness. Totally adore our girl xxx 

Three in a row!

Ever won a game of noughts and crosses and performed a mini victory dance? Well, we've won our own game of three in a row and have been performing victory dances since 6am.....G has slept for the last three nights! By sleep, I actually do mean sleep for once (not our distorted version which involves umpteen get ups). Just 1 tiny wake up in 3 nights. THIS IS BIG NEWS IN OUR HOUSEHOLD!

Disclaimer: I do not intend to agitate any sleep deprived parent with the above information. We are perfectly well acquainted with the rules of no-sleep club, and are the first to utter 'don't talk to us about sleep' at the mention of 'guess what happened last night....'

However after just under two years of no sleep, we felt that it was necessary to celebrate this small break through :) 

In other news

*'Daddy put glasses on'

Daddy  has had corrective laser eye surgery, and when he woke this morning he could see without glasses. It's a amazing! G however can't get her head around why daddy won't wear them. She's concluded that 'daddy's eyes working'. If only people who truly couldn't see could be helped by such a simple and effective procedure. 

*Endocrine apt

G has an endocrine appointment at the end of the month. Her height will continue to be monitored, and we'll also be broaching the subject of sleep and having her melatonin levels assessed. That aside, now we are under the care of the ENT department, I don't think there's much more we'll need to discuss! Screaming of course will be the order of the day, but at least it's our only appointment this month.  

*Helping others 

Since I stopped my reflux & intolerance support group, the requests have slowly been trickling in from surestart centres around the county for me to lend some advice and support to other families. I knew there was a call for such a support group, I just hadn't found the right people! If our experiences can offer just a glimmer of hope to other families, then I'll be a happy lady. 

I've also been able to share this blog with a couple of families who have recently joined the Turner Syndrome Facebook group and are pregnant with a beautiful girl with TS. Sending you all lots of love & prayers xx 

*Quiz night 

Our charity quiz night is fast approaching, I'm feeling a combination of nerves and excitement! An event has been posted on FB, would love to see lots of people there helping us to raise money for the fabulous Turner Syndrome  Support Society.

Once again, that's us up to date. The next time I post, G will be two years old! I actually cannot believe it.....

Dry shampoo

Is there a dry shampoo equivalent that temporarily sorts washing? Ironing? The dinner? Work even?

I realised this week that I currently have a severe overreliance on dry shampoo, and I'm not sure that my hair is particularly happy about this. Life doesn't allow time to wash hair. Heck it doesn't even allow time to sleep in this household! 

ENT appointment

We very nearly got shoed out of the ear nose and throat clinic, and told to get 're refered in the future' should we have further problems. Err hello do you know how hard I fought to get this referral? Did you not hear me say she's had at least 8 ear infections in little over a year?! Apparently not, it was lost in translation. Once I'd made my point that we weren't leaving, the consultant swiftly changed direction and told us about plan B-Six months worth of antibiotics, and then maybe gromits. Fun times. And bang goes the little good that her probiotics are currently doing for her digestive issues.... 

In other news....

•Why are the bottles yellow? Why is everything yellow? This evening G put a yellow crayon in the dishwasher. Anything remotely plastic, now yellow and waxy. Tims OCD barely allowed for crayons in the house as it was! 

• G has the memory of an elephant, literally. We are AMAZED. She recalls her whole day the childminders, reminds her childminder to get bread, and even reminds me to ask her how her day has been. This one time when she'd pooed, we joked about Winston sniffing her bum as his nose can detect any variety of poop almost instantly. Now it's 'Winston sniff my bum, or ninny smell my poo'. Only once we said it....Just like the one time we visited a friend's house and she pinched a sip of Lukey's apple juice. Ever since then she asks to go to Jo's to have Lukey's juice. Hehe! 

•G is ill again. Cough, cold, poking ears. Standard.

• G turns two in a ridiculously short amount of time. One, maybe two more blog entries, one more hospital appointment, and hopefully the arrival of 1 maybe even 2 baby cousins, and wham before we know it, TWO YEARS OLD! 

Totally adore our babe, yellow crayons in dishwashers and all xxx

'Happy Christmas, see ya bit'

Where has time gone?! December has flown by, and here we are on the eve of Christmas Day. 

I thought I'd take a moment out of our hectic Christmas Eve schedule (if you call eating prawn cocktail and watching Bridget Jones hectic!) to update you on G's progress.

At the start of the month, G had her regular check up with the gastro consultant and dietician. Cue the ear piercing screaming, play specialists trying their best to reduce said ear piercing screaming, and me doing my best to summarise the past 4 months to a variety of Drs whilst plying G with chocolate cake and failing miserably to put a stop to said screaming! 

We left with the usual responses 'she looks well, is putting on weight, and her reflux is well controlled if not all but ceased'. Only this time we were told that we should halt all further milk trials as her milk intolerance is looking more than likely to be a more permanent fixture. Soya will be our next trial. 

Interestingly they also discussed the possibility of G having something along the lines of allergic rhinitis. Pretty much since birth they'd  noticed G's permanent congestion and runny nose, and told us to mention it at our first ENT appointment.

On the subject  of ENT and after more ear infections that I care to remember, we have finally secured G's first Ear Nose and Thoat appointment. In the not too distant future Grace will be most disappointed to learn that we will not be making our usual Sunday morning journey to church, but to hospital instead (on a Sunday, I know!!). It's a shame really as G loves church.  She likes to sing and dance, and generally cause me a rather large headache by running riot during the service. Still this appointment is long awaited and hopefully the start of some resolutions to her ongoing ear problems. It may even shed some light into her congestion and runny nose. Must banish those candlesticks, not a good look! 

Appointment wise, that's us up to date. G - wise there is much to share, but as I'm sure you are all as busy as me today, I'll summarise....

-G will not stop talking, the expression 'chew your ear off' was made for her

-G does not, and will possibly never like Santa Claus. Pictures and ornaments are perfectly acceptable, men with white beards leave her in a similar state to hospitals

-She has become extra clingy, and should anyone dare try and push her, pick her up, or even think about coming near me, they are sharply and sternly met with 'no, don't do dat!' After 24 hours away, hubby wasn't even allowed to give me a cug without a barrage of abuse from his daughter

- She finally loves her 'toothpaste brush' but has perfected sucking the toothpaste as opposed to brushing her teeth 

-Colouring is her new favourite hobby, especially Christmas cards, Christmas paper, and at times, the sofa! 

That is us in a nutshell. We hope you have a lovely Christmas, and in the words of G 'Happy Christmas, see ya bit'.

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.