'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. 

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.....

'Walk walk walk!'

'You'll be wishing that she wasn't walking once she is......' These words were ringing in my ears as she was running away from me in Tesco today. I am however totally over the moon that she's walking properly, and we delighted in buying her first pair of shoes last weekend.

'Walk walk walk'

I love how she asks me to 'walk walk walk' with her. I love that she has the worlds biggest, silliest grin on her face when she stands up and runs away from me! I love that she beats her belly like a gorilla as she is stomping across the floor! I love that when she falls down, she gets back up and carries on. Strong willed and independent, that's our G.

Poxy Pox

She finally caught it. Chicken pox. It had spread like wildfire around the town, and with two other children at the childminders having it, her turn was imminent. Thankfully she only had it mildly, and is over it now (all bar a few scabs, one of which daddy picked off!). Plus like they say, once she's had it, she's had it.

As a result we did have to miss G's hearing test, but I'm not too bothered as she would have screamed the hospital down anyway.

Moomoo's shed

It's like a playhouse, only bigger and nicer! Daddy's plans of a man shed quickly evolved into plans for G's den after we saw how much G loved Pa's summer house. Now it's a sage green and cream haven, which has luxury lino floor, a variety of pretty lights and wall hangings, and could easily be mistaken for a vintage beach hut. She's obsessed with it, and it's name varies between 'said and head', but we couldn't have made a better investment. Cheaper than a playhouse too. Plus it doubles up very nicely as a Pimms and wine shed (she says sat on the sofa sipping a Pimms whilst it's tipping it down outside!).

July appointments....

We've a busy few weeks coming up:

-Gastro appointment regarding her reflux

-Dieticians apt regarding her ever growing list of food 'no nos'

-Feeding and speech appointment (what's the betting that all of her 65 words will evade her on that day!)

Best get those ear plugs at the ready because she'll be testing those lungs!

In August we'll also have our first appointment with the endocrine team to discuss G's Turner Syndrome and her future Growth and hormone treatment. 

For now, we're looking forward to some extra mummy & G time over the summer holidays, and our trip to Norfolk. 

Ice cream anyone?? Dairy free of course! 

Bugs, Cugs and wobbly steps

I've just realised that it has been over a month since I last posted. Wooops, sorry guys we've had a mad month! 

Bugs....

G experienced her first ever gastro bug this month. My goodness had we forgotten what projectile vomit and constant diarrhea was like (sorry!)! Two tubs of vanish, a bucket, a make shift bed of blankets and towels in the lounge, and a baby who couldn't stay awake for more than 15 minutes. Thankfully after 7 days she started to perk up. By day 10 we had our talking, tantruming, non sleeping baby back! 

During this time G had a couple of blood tests-one to check her kidney function due to severe dehydration, and finally her immune level test. All came back clear which was great news. 

Cugs....

G's language skills are developing daily. The word of the week this week is 'pig' as she has become an avid fan of Peppa Pig, and our personal favourite is 'cug' which is her own mixture of cuddle and hug. It's the sweetest thing when she heads towards you with outstretched arms shouting 'cug'! She has a bank of about 30 words now, of which she knows the meaning of. Some clearer than others, but when she said 'maoow' at a lady in a PVC catsuit on a music vid yesterday, we sure knew what she meant!

It's still too early to know whether her high palate (due to her Turner syndrome) will affect her ability to pronounce some sounds. We'll just have to wait and see. 

Wobbly steps....

Whilst G seems to be an early talker, the same can't be said for her walking. Crawling didn't come until around 9 and a half months, pulling to standing around 10 and a half months and standing alone only the last week or so. However, this weekend at nearly 15 months, she took her first two shaky steps!! We are looking forward to what the next few weeks bring.

So, that's us for the month of May! G has some extra mummy time this week as it is half term. I've a stack of school reports to write but I've no doubt that she'll command my undivided attention. We have a hearing appointment coming up in a few weeks, but that aside, a quiet few weeks hopefully. The same won't be said for the hearing appointment, they'll know her lungs work at least!!

Molar madness and dairy dilemmas!

G is learning new words every day, and is currently driving us insane by permanently asking 'who's that' to every person, noise and object. But what we really want her to learn is how to tell us whether  it's teeth or her belly hurting her.....

After finding umpteen excuses over the past two months for not starting G's dairy trial, I finally plucked up the courage this week. Starting off at the lowest level (butter in a baked product), I made a wheat/soya/gluten free carrot cake. Well as we all know, baby love d'cake, but did the cake love her??

This week, coincidently (or not), G has had the worst sleep in a while, awful reflux, major screaming tantrums, and lots of general unhappiness. 

The milk? Possibly....

Teeth? Probably.....

Reflux due to the teeth or the milk? More than likely....

So you see our dilemma! That is until I made a discovery. As I was tickling her tummy earlier, she flashed a big grin and I spied one shiny new molar, and another one waiting to erupt. WHERE ARE THESE MOLARS COMING FROM?! She's on her third. Usually they don't tend to show up until 14-24 months. Eeeek. She'll have a full set of nashers by 18 months at this rate. 

So the first leg of the dairy trial was a complete failure. I need to wait until these two molars have finished causing chaos before I try again. 

In other news we had the early years Portage team visit G at home last week. I had never heard of Portage until our health visitor referred us. I'd  presumed it was an acronym for some fancy name (it's actually a town in America where they first sent help in to the homes of children with additional needs), and to be quite honest I was a little nervous. Turns out I didn't need to be. Two lovely ladies arrived armed with books and toys and were here to help G in her development. After ten minutes of taking notes, they told me we'd almost certainly be signed off as G was (in her own words) 'WOW'!! When I mentioned my worry of not walking yet, they seemed surprised and said they wouldn't even bat an eyelid until at least 18 months. They also said that she's evidently concentrating more on talking than walking.

I must admit, with all of the appointments, the knowns, and the unknowns, I'm relieved to be told she's actually ahead of her peers in some areas. I guess I always worried she'd be behind. Not sure if that's the teacher in me, or the mother! 

What's next for us?

We are taking G for her first ever swim this weekend, along with her first ever visit to a country fayre. I can't quite believe she's not been swimming yet, but with all of the ear infections she'd had we didn't dare until they had fully cleared up.

On the not so nice list of things to do is to visit the hospital and have a blood test for her immunity levels. Let's hope G doesn't shatter any windows with her ear piercing scream! 

Happy Easter everyone, this year I'm thankful for Jesus's life and Grace's xx 

Heart scan-an unexpected result

Just a short entry this evening to update you on G's heart scan.

So yesterday morning arrived and I was surprisingly at ease. I guess the fact that things were 'normal' last May had led me to believe that they would be this time round. Only they weren't normal last May, we had simply forgotten about the hole in her heart! 

How could we forget such a major thing, you may ask.... Well the hole (or gap as the consultant called it), is present in all newborn babies. It simply closes after birth. So we forgot about it because we assumed that it was just a little late closing (I think she was around 3 months old at the time of her scan).

Back to yesterday's scan, and after the consultant had completed the scan, G was in a complete state. All appointments now cause G to have a major meltdown, so as you can imagine we were eager to leave as soon as possible. The consultant left to find Dr Archer, the specialist from Oxford who'd overseen all of G's heart scans-both pre and post birth, and took a rather long time to return. Three of them entered the room, and after lots of 'yeps' 'lovelys' and 'greats' we heard an 'ohhhhh' followed by a 'rewind, slow it down and there it is, pause'. Thankfully Dr Archer is amazing, and quickly explained to us what they'd found. I struggled to hear much over G's wailing (yep, she hadn't calmed down one iota!), but got the gist of it. The gap hadn't closed as expected.

It's medical name is Patent Foramen Ovale, meaning an opening between the right and left atria. Alone, it's not serious. Thankfully for G, she has no other heart conditions thus for now it's not serious. It can require surgery, but not until children are at least 3 or 4 years old. In adulthood it can be a contributing factor to strokes though as the hole allows clots to move through, and up to the brain. 

So, the plan of action? 

G will need a heart scan when she is three years old to determine the size of the hole and whether it will need closing via surgery.

For now, there's no point panicking. The fact that she doesn't need to be seen for two years says it all.

So, not the results we were expecting, but not the worse case scenario by a long shot.

Talking and tantrums!

Where has this month gone?! G's birthday seems so long ago. We've a fully fledged talking, but non-walking toddler on our hands.

This month has been a busy one, and I've plenty to share....

Podiatry appointment

We recently visited our local podiatry clinic with G to get her toe nails assessed. We'd hoped to get them cut. Due to her Turner Syndrome, her nails are deep set in to her toes, they are overly curved, and her two big two nails are nearly vertical to her toe as opposed to laying flat.

Unfortunately G screamed as soon as we entered the consulting room (as she now does with every appointment, everywhere), and her screaming was so unrelenting that the podiatrist didn't dare touch her toes!

We have been given advice on footwear, and been told that when she's old enough to be happy to let someone else near her feet, or near her fullstop, then we can go back for help with cutting her nails.

Weigh in

Our little sausage, who this time a year ago was so diddy that she was on the 2nd centile, is a porky 22lb and sitting close to the 91st centile. Best stop feeding her up, especially as she lurrrve d'cake!! 

Dietary advice

The time has come to start reintroducing milk in to G's diet. Eeeek! Thankfully we have contact with an extremely good dietician who is also an allergy specialist, and he has given a plan of action. Step one, give her biscuits with butter, that are cooked. The only complication is that they can't have wheat in. So the usual method of a bit of malted milk biscuit a day for a week is not going to be suitable for us. Best brush up on my baking skills! If she can tolerate milk in the form of a small amount cooked in a biscuit then we move to milk or butter in dinners, then cheese (cooked initially), then yoghurts, then finally milk as a drink. It will be a long slow process which we will halt at any point should her symptoms return. Once we've established her long term tolerance to milk, we move onto wheat, gluten and soya testing.

Sleep, hurrah!

On the subject of diets, we have made another big change to her foods. We've suspected for a long time that fruits upset her. We knew that the more acidic ones did anyway, and thus avoided them, but even the milder fruits with less sucrose in we're upsetting her. So we took the decision to do a two week fruit free trial. My oh my what a difference it made! Our baby is happy, less gassy, has (slightly) better nappies, and above all else she's sleeping for most if not all of the night.

Her dietician said she may have a sucrose intolerance and that we'll need to slowly reintroduce fruit later on once we've gone through all of the other reintroductions.....I sense a long road ahead of us on the food front.

Poorly again

G catches every germ going. I know all babies do, but we don't even get a full week in between the bouts of virus/colds/coughs, and when she is ill it an be for up to a month.

So after speaking to the doctor this week, we are going to have her bloods tested for low immunity. Not that anything  can be done should she have a poor immune system, but still it's best to know. Only complication is that her blood now gets taken from her hands (as opposed to heel prick) but they are so swollen from the lymphodema that it's impossible to see her veins. That will be a fun trip to the hospital!

'Who's dat?'

...... she says when the dog barks, a car door slams, or when someone walks through the door. 

'Woof woof' she says when we are in the car and I tell her we are going home.

'Cat' she says when she sees Grammy or Nan's cats.

Duck and baba (for her new baby) are also in her repertoire. For a babe who's been behind with her crawling and walking, she sure as Eck isn't behind with her speech. Me and hubby giggle to ourselves as she is always mimicking me. Today she was telling Winston to 'say er' or stay there whilst I was emptying the car. So funny that our little babe has a voice now.

Tantrums

Stubborn, impatient and strong willed are three characteristics which shine out brightly at the moment! Full blown tantrums occur on a regular basis, with the added effect of throwing herself down to the floor and wailing. Have the terrible twos hit early??

Parents evening and reports 

Work for me has been super busy and I've struggled a bit this month. Between G being ill, 3 nights of parents evenings, reports for parents evenings and two uni sessions for my masters, I have found it tough going. But heyho, when I get to spend my Thursday and Friday with my chatty princess, the woes of work are put aside.

So with only a week or so left of March, we have just one more appointment. The dreaded heart scan. I say dreaded, I think more so because all of her other appointments are relatively mild in comparison. Hearts are important. So here's to her heart being just as healthy as it was this time last year :)

G is 1 today!!

I won't bore you with the whole 'this time last year' speech as we all know how pretty darn lucky we are to have G here with us today. So, as an alternative post, I decided to think about what I've learnt in the past year!

- Sleep isn't overrated, that's just what we say to make ourselves feel better when our babe still doesn't sleep through age 1.

- We can sing the theme tune to a variety of Cbeebies bedtime programmes. Tim's still pretty confused by In The Night Garden and G goes crazy for Old Jacks boat. 

- Food can be both a fabulous tummy filler and the root of all evil if your babe has a sensitive digestive system.

- When your babe smiles at you, it can make even the crappiest of days better.

- That car parking at any hospital, regardless of county, is awful.

- Reflux is also the root of all evil (and lack of sleep)

- It's ok to discuss baby poop on a regular basis, and maybe even take a photograph should it back up your argument.

- Family and friends are amazing! 

- When your friends have a chilled out baby, and you have a screamer who can go for hours on end, you'd give anything for just 5 minutes in their shoes. But then you remember that you wouldn't have YOUR child, and that actually you'd give anything not to swap. 

- Teeth are also the root of all evil (and lack of sleep). For Gs birthday she's received her first molar! 

- Going to the toilet is no longer a time when you have 5 minutes to yourself (unless you lock the door and put your  fingers in your ears!)

- There's no point trying to wrestle a dog toy from G or infact Gs toy from the dog. They've certainly learnt the concept of sharing.

- You could watch your babe practice a new skill over and over again, and some more. 

- Looking after a baby, whether newborn or 11 months old, is the toughest job ever.

- We know every country route in Our county and the next! Tim's particular favourite used to be passing the police helicopter base!

- When someone tells you your babe looks like you, you beam proudly. 

- Your babe can't speak for themselves, so you'll do everything humanly possible to make yourself heard on their behalf.

- When they see you first thing in the morning, it's like they haven't seen you in years. I love that smile! 

- Ewan the dream sheep really is a dream, for G that is. I'd quite like to throw him and his repetitive lullabies off the nearest bridge! 

- Having a husband who isn't afraid to do the housework, cook the dinner or  change the babies diarrhea-filled nappy (albeit with gloves and a peg) is a godsend. 

- Baby sick has the potential to cover you, your baby, the floor, and require whole new outfits for all involved.

- Baby wipes make for the easiest cleaning tool. Once upon a time our house was cleaned by a multitude of products, now a quick run down with a wipe will suffice.

-The dog will do anything for a lick of a dirty nappy, or a meal of baby sick!

- God given miracles do happen.

- It is possible to love a little person sooo much that you couldn't imagine a single second without them. Well, except 5 minutes of peace in the bathroom! 

So to our little miracle, our 2%er, HAPPY FIRST BIRTHDAY!!! Xxx

Winston & G's conversation-part 2

A Truce??

Winston: Hey little taileater, I'm presuming we've called a truce on the whole 'operation give mother no sleep'?

G: What makes you say that?

W: Well, this past week I've not really heard you much at night, and well I've really quite enjoyed sleeping all night.

G: To be honest windoggy, I've just been finding it soooo hard to stay awake. I don't know why, but I can only really wake up once, and then after 10 mins I'm in the land of snooze again. Then the next thing I know I see mumums smiling face and it's time to get up!

W: Hmm well I think I know why that may be..... I overheard mother and father last week. They said they'd just discovered that a side effect of your reflux medication is insomnia.

G: In-whatia?!

W: Insomnia! It means that it can stop you from sleeping.

G: Well that explains why I had the energy to have a rave in my cot for at least 90 minutes every night, and sometimes 3 or 4 times each night. But what I don't get windoggy is why I'm so sleepy but mumum is still giving me this medicine?

W: Have you not noticed, mother used to give it to you before bed, meaning you were wide awake during the night, but now she only gives it to you at breakfast time!!

G: Oooooooooh, that explains why I'm finding it so hard to wake up in the night.

W: I must admit, I'm kind of pleased that you've given up on the 'stop mother sleeping in the hope that she'll give up work' shenanigans. I do lurve my sleep. Plus mother has been back at work for 4 weeks now, and she's showing no signs of weakness. Maybe we need to accept she's going to be one of the mothers who juggles home and work.

G: Oh don't dispair my furry friend, I haven't given up....just taking a short break. I've given mumum 7 good nights, I'll throw a spanner in the works soon. I've good a new tooth-that'll be amunition for an all nighter!

W: Well give me plenty of notice when you wish to resume this sleep deprivation game. Plays havoc with my routine. 

Oh, by the way, I love that new game you've started...

G:What new game?

W: The one where you throw me pretty much all of your breakfast, lunch and dinner, and let me lick your hands. Scrummy!!

11 months and counting!

Where has January gone?! Between work, hospital appointments, sleep, no sleep, housework (or lack of as Tim would say) and keeping little miss G entertained, the days have flown by. Last weekend saw the dedication of our beautiful babe at my local church. What a lovely service it was, and how fabulous it was to have so many people there that care about G. The bring and share lunch afterwards was pretty amazing too! 

Even scarier than the disappearing days is the fact that we are fast approaching a certain little ladies first birthday. As she turns 11 months on Sunday, we are left scratching our heads and wondering how on earth our little miracle can be turning 1 in just over 4 weeks time! Someone pass the bunting....

Tantrums and teeth

My oh my can our girl scream. She has a scream so ear piercing that she can silence a room. Especially rooms in hospitals and doctors surgeries. Stubbornness seems to be trait of hers that is revealing itself more and more. If she doesn't get her own way then you better reach for the ear plugs. Sometimes we simply sit and laugh, amazed at how quickly she can turn from a happy smilling child to a raging monster (ok, a little harsh I know). I do remember a conversation with Arlene from the Turner syndrome society some 4 or 5 months ago, and her telling me that many girls with TS know their own mind and are strong willed. In Gs case, that's putting it mildly! Admittedly tantrums are always followed by more rounds of giggles and smiles, so she can be forgiven in an instant. Her smile makes me melt :)

Teeth could well be the source of the screaming right now though. With 6 on show and 2 more making their way through, I'd say that could at least be a contributing factor.

Positive appointments

G has had two paediatric appointments this month-one regarding general health and Turner syndrome, and the other regarding her reflux. Both specialists are exceptionally pleased with Her progress, and the frequency of her appointments are decreasing.

We have been told to tweak her reflux medication slightly and reduce it, but it's something I'm considering carefully first. We've only had a settled baby (in terms of reflux) for around 6/8 weeks. The days of hours of screaming and endless car rides at all hours are not far enough behind us for us to dare tamper with the one thing that's keeping our reflux hell at bay. Obviously we don't want her on meds long term, especially the apparently high dose that she is on, but for now we have the battle of dairy reintroduction to face, and that alone won't be pretty.

In terms of Gs Turner syndrome care, we are now being passed over to an endocrine specialist to start discussing growth hormone treatment. Whilst Gs height and weight are pretty stable at the mo, her height is on the lower end of the scale, and over the next 1-2 years is likely to taper off. I don't know enough about the growth treatments to say much more yet, but it's something that will be at the forefront of discussions over the next 12-18 months. 

Any dietary requirements madam?

As G is approaching 1, we have to start reintroducing the foods that she is intolerant to to see if she has outgrown these issues. The main food intolerances are milk, wheat, gluten, and oats, along with rice, apple, tomatoes, pear, mango and a few other fruits causing mild (but still painful) digestive upset. As she has many foods that upset her, we've decided to start with dairy, as that's the one that gave rise to the worst reaction. We are very much NOT looking forward to the weeks and months ahead of reintroducing various foods, but it's got to be done. Fingers crossed that she's outgrown every single one of her intolerances, leaving only me and the dog with our dodgy digestive systems! 

New routines

Since G has started the childminders, she has dropped her second nap. She is so active during the mornings that she simply doesn't have time to nap. So I'm trying to keep that sleep routine going on my days off, but with varying success. G is a tad young for dropping her naps, however in terms of sleep she doesn't conform to the norm. We are lucky if she gets 10 or 11 hours sleep including naps, as opposed to the recommended 12 or 13 hours for her age. I'll persevere with her new routine, and do my best to wear her out during the day in the hope (STILL) that she might start sleeping through regularly.

Speaking of the childminder, Grace has settled really well, loves the other children, and is only screaming for a few minutes when I leave her! Can't ask for much more. 

So out with January and hopefully the rain, and in with February. We've an appointment at the feeding/speech therapy clinic next week, and then for the rest of the months it's work, play and the countdown to THE birthday of the year (mummy's 30th and grandads 60th won't be a patch on little moos day!).

Ooo and not forgetting my very first reflux and food intolerance parent support group tomorrow. I'm a tad nervous but really felt the call to set up a caring, supportive network for local families. If our experience and journey can help at least one other family, then it will be worth it. 

January yellows!

Many of us often feel a little blue come January...back to work, a lovely Christmas being a distant memory, no money and usually a few extra pounds heavier! 

Well this year, I don't have the January blues, I'd go as far to say I'm pretty happy. January yellows I've named it!

Why you may ask, is someone so happy in one of the most depressing months of the year. Let me tell you in a nutshell:

- I survived my first week at work and I have remembered how to control a class of 30 kids

- For at least 3 days a week I get to drink hot tea, eat warm food and go to the toilet in peace

- G enjoyed being at the childminders (except the token screaming when I drop her off and pick her up)

- G is learning lots of new skills: sitting up, pulling herself up, opening and closing doors, hunting out the hidden dog toys, zooming round in the walker

- Daddy is doing well with his new business

- My new parent support group starts soon 

- I will get paid a wage at the end of this month!!!

Ok so we still have our battles-G and windog being in cahoots to wake us up every night at least twice (windog is wearing tired of this game but G isn't!), and I still can't pinpoint which foods are aggrevating Her. But Heyho, you can't have it all. I mean sleep is over rated anyway!

What's next for us?

This month G has two appointments-one with the paediatrician where I will most certainly want to discuss her ears, and one with the feeding and speech therapist. 

Ooo and G has her first ever birthday party to attend, one of our antenatal buddies first birthday. 

Happy January!