Eat, don't sleep, rave in my cot, repeat...

If babes and dogs could talk, I'm certain that my two would be having this conversation right now....

G: Windog we need to up this sleep deprivation business.

Winston: But why? I'm quite partial to some sleep!

G: Because mumum thinks she is going back to work next week, and we cannot let that happen.

W: Hmmm, I see your point. I've enjoyed mother being at home for the past ten months. What's your plan little taileater?

G: Well you know how she likes her sleep, and I don't let her have much, well let's just join forces so that she has none. Plan?

W: I can see how this would work, but like I said, I also like my sleep....

G: Oh don't worry, I'll take the Graveyard shift, couldn't deprive you of both your daytime and nighttime slumber! I simply need you to take over when I need my 20 minute catnap.

W: This sounds doable. Do we have an exact plan so I know what I'm working to? You see I'll need to make up the daytime zzzz's to compensate.

G: Ok, mumum feeds me at 10pm, so you refuse to get off their bed after this, just to ensure she's fully awake. Then around 11:30/midnight when she thinks she's had a good hour, I'll start the grizzles. At this point I'll let her think that my dummy and Ewan have worked and I'm sleeping soundly again.

W: Good plan so far, sounds easy!

G: That's where you come in. You'll howl at the back door shortly after mumum has dozed again just after midnight. Do not stop, I repeat, do not stop until she's let you out for the worlds longest poop.

We'll let her have a cheeky half hour then, and bam, 'waaaaaaaa' I'll start again.

W: Ooh you are naughty!

G: Only this time, I won't stop, I am pretty good at doing a two hour stint. So that should see her delirious by around 3am. Now, given she's decided she needs to wake at 5:30am so we can leave the house by 7, I reckon one more howl by you around 4:30am should seal the deal.

W: Ummm couldn't you take the last call, I'll be shattered by then! 

G: Well contrary to popular belief I do need an hour or two of beauty sleep.

W: Pretty please! You can chase my tail???

G: Ok, so long as you let me suck it? Plan of action 'make mummy think she can't possibly go back to work on so little sleep' starts in t minus 8 hours.... 6 nights should do the trick!

Another ten month old's letter to Santa...

Many of you will have seen the original, it did make us chuckle! Grace needed to tweak the letter a tad though.....

Dear Santa,

I'm also a ten month old baby who writes because her mother has told people to buy gifts that I simply do not want. So I thought I'd send you a last minute wish list. She has asked for books (er hello I can't read yet), stacking cups (I only like knocking things down, not building them) and wooden toys (we have too much plastic apparently). 

Here is my real list Santa. It's pretty similar to that other ten month old, but with a few tweaks. And please don't fob me off with any fakes Santa, I've got teeth and I  know how to use them....

Yours lovingly,

G

1) Keys. Mums keys or dads keys, I don't mind, or even grandads keys! They must be metal, and preferably have a variety of shapes. I also like the plastic car key fob that has buttons to open the doors remotely. If I slobber on them enough they may stop working, or so mother says. And don't even bother with those plastic imitations, my mums already tried that.

2) A mug or glass, preferably with leftover tea or juice in it. My mum has learnt that I will crawl just about anywhere to reach one of those, only for her to cruelly remove it at the last minute. So I try to catch her unawares. I prefer there to be liquid left in there, and of the sweet tasting variety, which I especially love to tip over the carpet. This makes daddy particularly mad as he's obsessed with this pink stuff called vanish. Oo come to think of it I'd like a tall pink vanish canister too!

3) Any part of the dog. I particularly enjoy his feet and his tail, though his ears are a tad softer on the days that my teeth are playing me up. Mum and dad shout at me whenever I try to suck chew or bite Winston, but he doesn't seem to mind.

4) Dog toys. My particular favourites are tennis balls and rubber treat toys. These make amazing teethers. Mum literally jumps out of her skin to take these from me, though she keeps on telling people that baby's who grow up in a household with a Winston will get better immunity. I think that's code for more fun.

5) Mums phone. It has pretty lights and plays sounds.  I've also learnt to accept new friend requests on FB for mummy, so hi if you're new to mummy's  page! Daddy says her phone is glued to mummy's hand. Is that a good thing? I want it to be glued to mine please thank you. 

6) Glasses. Mummy's or daddy's I don't mind. I especially love to lick them and put my grubby paws on them. 

7) Dirty nappies, preferably inside a sweet smelling nappy sack. These make a lovely crinkly sound, and perhaps make mummy go the maddest of all when I head towards them. 

This is all Santa. Much love xx

Merry Christmas!

Happy Christmas one and all!

Gosh, the 20th December, where has the time gone?! This time last year I was nearly 7 months pregnant, and Christmas  for us was a mixture of emotions. Not knowing was the hardest part of all. Deep inside we had the hope that she would be our miraculous 2 percenter, but we knew too that the odds were against us. This year however, we have nothing but joy, love and thankfulness in our hearts. 

So, I just wanted to take a moment before the Christmas madness descends on us all, to wish all of our family and friends (both real and internet based, near and far) a superb Christmas. I also wanted to thank each and every one of you for your words of encouragement, your prayers, your 'likes' and continued support.

My blog is officially one year old this December, and our journey with Turner Syndrome is a tad older. We have cried many a times, we have laughed many more, we have slept very little and we have driven a lot! But the one thing I can honestly say, we would not change ANYTHING. G is our little miracle, and we are very much looking forward to spending our first Christmas with her. Equally I'll be remembering the Christian meaning of Christmas, and having that extra bit of thankfulness to God for what he's blessed us with.

Happy Christmas all!! Tell your nearest and dearest you love them, and remember with fondness those who've passed. 

Sending lots of Christmas love and hugs xx

Ps... The good sleeping didn't last, the commando crawling is causing chaos (G can chase the dog, chew his tail and eat his toys), the teeth are still coming through, and the high temperature is back. We can't have everything can we! 

Tonight I will mainly be bragging

So hello December! The tree is up, the needles are falling off, and we are super excited about Christmas.

I warn you, today's post may be a little smug, I may even brag a little, and it will probably all come and bite me in the bum tomorrow! But here goes....

The babe eats!

For the past ten days or so G has been eating three meals a day. She is no longer spoon averse, so we now offer a mixture of finger food and textured spoon-fed food. I know this won't necessarily be the end of our feeding issues, but for now it's a giant leap forwards.

The babe has teeth!

Gs reflux has gone crazy this last week and initially we put it down to her ongoing ear infections. That was until I spied two more teeth making an entrance. We then got so caught up in the two teeth that we missed a random third tooth appearing along the bottom row. That certainly explains the reflux flare up! The dreaded R word does mean that daily (or should I say nightly)screaming is back, and yes you guessed it, the A14 is our BFF.

The babe crawls! (Well shuffles commando style)

G had her development check 4 weeks ago and passed with flying colours. Well, all except the crawling element. So a follow up check was scheduled for the 12th Dec to assess her crawling progress. We've been on a countdown, and in the end I gave up all hope that she'd crawl by tomorrow. Surprise surprise, this afternoon she has given a glimpse of a commando style shuffle that could be passed as the first stages of crawling!! 

Now I know you experienced mothers out there will be currently laughing away to yourself and telling me 'you'll wish your babe wasn't crawling soon enough' and I'm sure you're right (cue future blog entry!). But for the next few days we'll take great delight in watching her new moves. Might I add that it was a strong desire to get hold of an empty mug of tea that spurred her on. Strange child!

The babe is currently off anti b's!

As you well know, G has been plagued by recurrent ear infections. Well she finished her latest course of antibiotics on Monday. Me and Tim are waiting with baited breath as her infections usually tend to reoccur within 48 hours....or when the weekend is due. Watch this space.

The babe sleeps 7 hours for two nights in a row!

I know, tonight she will wake up a ton of times and I'll be wishing that I didn't brag about this, but we've had two nights of 7 hours uninterrupted sleep. Never does she do this more than one night. Could there be a link between the lack of antibiotics in her system??

What's ahead for us?

Feeding and speech therapy 

Tomorrow we have our first appointment with a feeding and speech therapist due to Gs feeding issues. Yes, they are currently resolving themselves, but as she will most likely have speech problems later down the line it is best to get on to their radar early and stay there. Speech therapy appointments are few and far between. My time as a teacher has taught me that for sure! 

Developmental check

G has her crawling check tomorrow, but thankfully I think we'll be sent on our way pretty quick sharp. 

That's us done for now, we are pretty chuffed parents at the moment! I'll post an update around Christmas. Enjoy December :)

The start of the end of maternity leave

Just over 9 months ago I said goodbye to my students and colleagues, packed up my classroom, and carried my beautiful gifts home. At 36 weeks pregnant I was more than ready to finish work, and nervously awaiting the arrival of our precious Turner syndrome babe. All these months on, I'm now getting ready to return to work. What a roller coaster 9 months! I'll certainly be returning a changed woman.

A part time return 

Yesterday I had my first proper day at work in 9 months. I say proper day, but what I mean is more of a settling in day. A day of sewing in fact, with some old and new students. It was fantastic to be warmly greeted by staff and children alike, and knowing that G was at home with daddy meant that I had no feelings of anxiety. I have 4 more settling in days between now and Christmas, with a view to make a full (or should I say part time) return come January.

Daddy day!

As G is still to have further settling in days with the childminder, Tim took the day off work yesterday to look after her. Can you believe it was his FIRST ever time looking after her for more than an hour?! He has joked many a time about me not having the house clean or dinner on the table when he returned from a hard days work, so what would I be returning to? Well, a happy baby, a roast chicken dinner prepared, and washing up done. A clean house I did not find, but let's face it, a seasoned pro like myself doesn't have time to clean so I let home off. He had a super day, and I'm so pleased that daddy and grace were able to have some bonding time. He even introduced her to a new food-tuna sandwiches!

Out of hours fun

Yep, you guessed it, ears AGAIN. Within 48 hours of finishing her antibiotics, G had dramatically turned. She was back to hours of screaming, yanking her ears, refusing milk and food, and staying awake all night. Thankfully yet again we had a super service from 111 and had an appointment scheduled with the out of hours GP within two hours. It took less than a minute to confirm what we already knew, and we left clutching yet another prescription. I won't even say that I hope this is the last of it. It won't be!

In other news...

*We saw the dietician today to try and make sense of the long and bizarre list of foods that aggrevate G, and left none the wiser. Our dietician is going to liaise with our paediatrician to possibly look into further testing regarding foods/allergies/intolerances, though it may just be that G has a ridiculously sensitive stomach and bowels.

*G is spending more and more time with the childminder and whilst she isn't 100% happy, she didn't scream for all of the hour that I left her! As I've mentioned before, we're really lucky that our childminder is a close family friend of my family, so we know that she will be very well looked after.

* G had her barium swallow test just over a week ago. It was a traumatic experience for her. I don't mean in the sense that it hurt her, but she had to be held down and virtually force fed a thick mixture which went everywhere and even resulted in her wetting herself so badly that it covered the x ray table. Oops! Still, it needed to be done. Awaiting results.

So, December is fast approaching and we are super excited about our first Christmas with Grace. We've even managed to shoe horn a few early decorations into the house, for Grace's sake of course! 

A B C ....

A is for..... Aversion

Food aversion, or to be more precise, spoon aversion!! Feeding is a huge problem at the moment. G is extremely stubborn and will fight tooth and nail when it comes to being fed from a spoon. She was baby led weaning, but wanting to get more calories into her, I started making soups and dinners that she could share with us. Only she is refusing anything from a spoon. Back to melon, roast chicken and toast....

B is for .... Barium Swallow

On Monday we'll be taking G for her barium swallow test. In particular they will be checking the extent of her reflux, for signs of aspiration (liquid going down the 'wrong tubes' and to the lungs) and that her general upper GI anatomy is all correct and present. The worst part will be starving her before the x ray. Mind you with the little amount that she is taking food and milk wise at the moment, maybe that won't be such a problem.

C is for ...... Car

Yes, you guessed it, our evenings are once again being spent driving around to settle little moo. Not much more to say on this subject. Hmmmphh

D is for........Drooling

We may have some more toothy pegs to accompany the bottom two. Though we are hoping that they do not appear in the next week or so. Poor monkey has enough to contend with for now thank you very much!

E is for..... Ear infection

Again :( And it's swapped back to the original ear this time. So that's 3 infections in 7 weeks, no wonder she's been so unhappy and we've needed to resort to the A14. At least I managed to get her seen to today instead of spending a third weekend at the out of hours surgery. I might set up camp there soon! 

The above aside, G has still had plenty of smiles and giggles for us. She had her 7-9 month check today, and apart from not being able to pull herself up or crawl yet, everything else development wise is perfect :) And she's put on some more beef! Just shy of 19lb now, which means the milk and food issues aren't affecting her weight gain for now. Now time to beat these ear infections once and for all! 

Good riddance October!

This evening's post marks my 40th entry for the Turner Syndrome and us blog! It has been looked at over 19,900 times, and has audiences as far as the US and Oz :) I've still not managed to crack the task of enabling my blog to show up on a simple google search for say Turner Syndrome, or Turner Syndrome stories, but I'll persevere. So before I start I wanted to thank all of my readers, both new and old (so to speak!).

Nice November??

October was an absolutely pants month for G. Last week, another trip to the out of hours doctor after a full night of screaming, led to G being diagnosed with her second ear infection of the month. The other ear as well. Can you believe that she picked the night of the clock change to pull an all nighter? We saw 1am and 2am twice. Felt like Groundhog Day!
Initially, things got worse before they got better, with G reacting badly to the antibiotics. Two days later and a phone call to our GP resulted in a different antibiotic which seemed not to disagree with her quite so much.  Thankfully a week on and she is getting back to her smiley little self. October has truly been horrible. I think I can count the amount of sleep I've had all month on two hands, ok and maybe two feet aswell!

Weaning ups and downs

Up until two days ago, G had been totally off her milk and solid food. In total she was off it for around 3 and a half weeks, which is pretty much the entire time of both ear infections. She wouldn't even entertain the idea of putting her favourite melon near her mouth, or drinking more than 2oz per feed. Since feeling slightly better, she has gone back to her usual milk feeds (around 25oz per day), and back to sucking and nibbling on small amounts of finger food. In fact today was her best day yet. She polished off toast and jam for breakfast, and at at my brothers birthday lunch a mountain of turkey accompanied with a few licks of parsnip.  Let's hope it stays that way.

Paediatrician update

Last week saw our three monthly visit to Dr R's clinic. After speaking to Arlene of the TS society, I went armed with questions, and wanting referrals for G-at the very least seeing an ENT consultant-but came away dismayed. Not only was the appointment an hour late, but G had lost weight for the first time ever, and as always we were told that she'd grow out of all of her 'issues'. True to form though G screamed the department down, and Dr R could at least see that she's still often a very unhappy child. We are due back in January, and if G so much as has a sniff of another ear infection, I'll be demanding that referral! As for her other issues (reflux, permanent congestion, prolonged screaming in pain, food intolerances) I will continue to monitor them. In terms of actual Turner Syndrome related issues, none were spoken of. At the very least I had expected an initial discussion on growth hormones, but this isn't an urgent matter just yet.

Is the clinginess subsiding?

Yesterday me and Tim travelled to Essex to attend a wedding. We had a fabulous day, enjoyed the company of old and new friends, and to top it off G was fantastic for my parents. Yes she had her 5pm meltdown and needed a drive in the car to settle her, but what's new?! She even managed to send us a selfie from my sister's phone :)

In other news

Pumpkin carving is a tradition in our household, and this year a third pumpkin appeared in our window. Can you spot which one is little moo?

Last week I had to enlist the help of my neighbour, who's a nurse, to unravel a tightly wound hair from Graces second toe. It was wrapped so tight that her toe had gone red. Teamwork enabled us to remove the hair with minimal fuss and before it had caused any damage. Oops! Since then I've had a fair few inches lopped off my hair, so hopefully it won't happen gain.

Grace adores several of my friend's children. We spent a lot of time this week with 2 year old Olivia, and 6 year old Lucas who adore Grace just as much. Maybe she has some best friends in the making, just like the respective mummies!


So.... the nights are drawing in, the babe is now 8 months old, and a return to work is an ever looming prospect for me. I'm meeting Grace's childminder this week. Though as she is a longstanding friend of the family, we know that she is most definitely our best option.

Hopefully November will be full of smiles, new developments and more to the point EAR INFECTION FREE.... We can but hope.

Experience over expertise...

...that and a good helping of mothers instinct!

Poorly moo
The past few weeks have been particularly tough for Grace- her first ear infection, coupled with a cold and the appearance of her first two teeth have been a recipe for lots of tears, no sleep and nightmare reflux.
After two nights of Grace waking every 20-30 minutes we decided to take her to the out of hours doctor (typical it was a Saturday). She had a raging temperature, had barely fed or slept for 36 hours and had an inflamed ear canal. Off we were sent for a prescription of antibiotics, and lots of TLC.
Over the past ten days Grace's mood has gradually improved, and she's slowly getting back to her old smiley self. The sleep problems however, continue to haunt us.

Cat naps and smiles
Grace has never been a good sleeper, she's probably slept through a handful of times (as you often hear me moan), but the past few weeks have been particularly bad. Her usual pattern is to wake 2-4 times per nights, but once the dummy is popped back in and Ewan is on, off she drifts. I have broken sleep, but at least it's around 5 or 6 hours in total. She is also a notorious cat napper during the day, 20 mins and she's good to go for another three hours! Well it seems that cat naps are now the way forward at night. Instead of waking and needing her dummy then snoozing again, it's 'hello I'm awake for the next two hours, entertain me and do not dare to put me down or else I'll scream and scream and scream'. What to do? I may have mentioned before that allowing Grace to scream simply isn't an option. It aggregates her reflux, she pukes everywhere, has acid in her throat and mouth and then screams even louder because it hurts. So why is she such a bad sleeper? Reflux? Food issues? Side effect of her antibiotics? Who knows, but last night was a lot better with only two small wake ups. It may be a coincidence that yesterday was her first day off the anti bs, and also her first day without food products containing egg. We'll have to see how we go!

Expert help
Things had gotten a little too much for us all yesterday, and we both decided to take her to the GP to see if there was anything obvious still causing Grace's upset and sleep disturbance. Even Tim was in agreement to come to the doctors. Unfortunately, as I find all too often now with GPs, once they saw that her temperature was normal, her heart and chest sounded fine, and that her ears had cleared up, they dismissed us. No offence intended to GPs, but their knowledge of Turner Syndrome is so limited (if any at all), that I just end up coming across as a neurotic mother. So after some frantic reading through our pack of Turner syndrome information, I decided that there was only one thing for it...ring Arlene!
Arlene is the founder of the Turner syndrome society, and someone that I have been in touch with via email for over a year now. Despite her offers of a chat anytime, I hadn't got round to actually making that call, but after getting nowhere with GPs and paediatricians I NEEDED to talk to someone that actually understood. 45 minutes later and I was close to tears for the umpteenth time in recent days, but this time through sheer relief and happiness. She is a wealth of knowledge. With 15 years experience running the charity, and having her own Turner Syndrome daughter, she understood every single issue that I explained and had lots of practical advice. I learnt so much more in that short call than I had learnt from anyone in the past year. Some interesting things included:
* Ts girls often have under developed taste buds, and so need strong tastes, or else eating for them becomes pointless. Many babes and toddlers struggle with weaning and feeding, and this could be one of the reasons why. Garlic and curries it is!
* Due to the high palate in their mouth they need to be fed bolt upright, or else the milk shoots to the top of their mouth and makes them gag, increasing the likeliness of feeding issues.
* Sleep problems are EXTREMELY common throughout their whole life, they'd be awake for 23 of the 24 hours if they could!
* TS girls have high pain thresholds, and are also often stubborn, so you don't know they have a problem (ie infection, fracture) until it's more serious.
* The ENT tubes inside their heads are a lot smaller than normal, which often means they suffer terribly with congestion and infections. In Graces case this is already occurring (ear problems, sinus, nasal etc).

So much more was said, but without looking in my notebook of wisdom, that is all I can remember for now.

We also had an interesting chat about raising awareness of Turner Syndrome. Next year is the 15th anniversary of the charity, and they are hoping to raise awareness nationwide. As part of this I have been asked to give my story, from diagnosis to present day. This is beacuse they are also trying to highlight how care during and after the pregnancy varies around the country. As we finished the call, and Arlene reminded me that I know best, I am not a neurotic mother, and that I'm doing the best job I can (I needed to hear that!) one of the last things she shared with me was the story of a family who were given the news of a TS diagnosis during pregnancy. Instead of being told ' I'm sorry, your child has a genetic disorder called Turner syndrome and probably won't surivive, abortion is an option' this family were told 'congratulations, you will be having a beautiful little girl, and she will have Turner Syndrome'. My heart melted :)

Speaking of beautiful girls, here is ours. She's even more beautiful for only waking twice last night, and giving me a solid 4 hours sleep between the two!!

Soggy cornflakes and cold tea!

I'm one of those people that needs to eat my cereal within minutes of pouring the milk. I like it crunchy! Tea, I can drink it scolding hot. This morning I realised that I've actually become accustomed to cold tea and soggy cereal. I wouldn't go so far as to say I like it, but if it means moo gets to finish her melon (that she has thrown on the floor and I've picked up at least 50 times) then I'm happy.

Gastroenterologist appointment

So in my last post when I said we were done for appointments for a while, it had completely slipped my mind that we had a long awaited gastro appointment. Dr Rao had referred us to another hospital she no longer felt she could help with Grace's reflux issues. So on Tuesday we entered the realms of a new paediatrics department. My goodness me, what an experience! The waiting room was buzzing with toddlers and teens, tables with games, and children desperate to put more glue on their pictures. For a children's department of a hospital, it was a pretty sweet place though. Our gastrienterologiat made me recall Gs little life so far, including pregnancy and birth (I need a small essay to hand anyone else that asks!), and what medication she's on. She concluded that there's no doubt G has a decent case of reflux and also milk intolerance. However above and beyond that we learnt very little more. Her meds can be increased as she's on the lowest dose, but you know what I think about giving her more drugs! We were also sent to see the resident dietician who specialises in allergies and gastro issues. He was nice and helpful. We are to now avoid wheat, soya, dairy and test egg before avoiding if need be . One thing I learnt is that tomatoes, strawberries, oranges and coloured fish contain histamines. Due to this very nature they'll bring on a rash but not necessarily mean the babe is allergic. 

Anyhow, the long and short is that Gs barium swallow study will now be booked to check that there is nothing anatomically wrong. Apparently a ph study is not necessary as she thinks Gs acid levels will be low due to the medication on she is on. We will be back to see the gastro team in 3 months. 

Breakfast.....baby wipes and bath flannels please mum!

Weaning hit a brick wall last week. We had lots of explosive nappies and various food culprits due to my eagerness to introduce new foods. So we are back to her 4 safe foods, and introducing one new food every 3 days. This week it's apple. Melon is still a firm favourite, however baby wipes seem to be THE best thing ever. The minute she sees the pack, whether it be at the end of the meal or during, then that is all she wants. She throws the biggest hissy fit if she can't have one. It's funny really, if she had her way she'd eat her bath flannel and baby wipes for breakfast lunch and dinner!

A reminder that she's mobile

G cannot crawl yet, however yesterday morning she gave me a stark and pretty scary reminder that she is still mobile. Without going in detail (and being judged for being an awful mother!) she had a minor tumble. Needless to say I was in a worse state than her, and after ten minutes of cuddles with mummy, Rosie rabbit and her dummy, all was right with the world. Lesson learned....

Turner syndrome support 

I've recently discovered their Facebook page, and finding lots of useful nuggets of information on there. For instance, I joke that G is high maintenance as she's like a Duracell bunny, she cannot be still for a second. Constant entertainment is needed. After reading a post on the FB page, I learnt that many TS girls are high functioning. Two thirds of them also have sleep problems. That is G down to a tee. The Turner syndrome society also have an annual conference every October. I'm gutted that we are not in a position to attend this year, but very much looking forward to signing up next year. 

So that's another update done. Time is flying and G is now 7 months old, ahhhh slow down time!! She's now sitting up unaided most of the time, apart from the odd face plant! 

This next week we will be seeing several mummy and baby friends. G will also get her first experience of lots of people and loud music as me and my mum hope to attend our churches 40th anniversary celebrations. Hopefully she'll have lots of gorgeous smiles for all of the lovely people who prayed so hard for her during my pregnancy and her time in special care. 

Ooo that's my cue to sign off, her hour long nap is over :) 

Toast, for breakfast?!

I adore spending time with my little monkey at the moment. She's so funny! She's inquisitive, giggly, and into everything. Tantrums and stubbornness are also something she's discovered-apparently Tim says she gets that from me?!

Community paediatrician visit

Last week I took G to visit the community paediatrician. She will focus purely on Gs development, whereas Dr Rao will focus on Gs health and her Turner Syndrome checks. She was extremely well behaved and performed her best tricks -picking up things with her finger and thumb, turning her head to different sounds, and attempting to lift her hips and knees to crawl. She also threw absolutely everything she was given onto the floor, but in her defence she was given umpteen tasks and tests, and we were there for over an hour!! We didn't necessarily need to get involved with community paed, but the health visitor recommended we did. She said that it's easier to get on to their radar now than it would be when say G has a problem later on in school (not that we expect she will, it's more of a precautions move). 

Anyway, thankfully the visit was a success, and they don't want to see G until she is around 4/5 years old. Development is exactly as it should be :)

Rancid raspberry

Our chemist have been extremely cooperative when it come to G meds, but we still cannot get her to take this darn omeprezole. It's been strengthened so she needs less, and also flavoured (which might I add was a waste of time-no raspberry I've ever tasted tastes like that), but we still cannot get it in to her. It's more crucial than ever as the GP and paediatrician think that her awful night time congestion and cough (which I'm certain are the source of her sleep troubles) are as a result of her reflux not being under control yet. So we now have the medicine coming in capsule form. I will break it up and mix it in with food, and hopefully she will take it. It will certainly be less offensive than the liquid version so fingers crossed.

On a more positive note, the domperidone is helping to reduce the amount that she is sick. We've not needed to change mine or Gs outfit in at least 3 days (no we're not grebs, you know what I mean!).

Eating like a big girl

G LOVES baby led weaning, and so do I! She really enjoys feeding herself, and Winston really enjoys her throwing her leftovers on the floor....

We've had many a gagging incident but I'm ok with that. She's started to chew the food (or gum it!), and best of all it doesn't make her sick like the purées did. Strips of roast chicken are her newest love, as well as melon. However, the community paediatrician thought that baby led weaning was an alien concept, and had the most puzzled look on her face when I told her G had jam on toast for breakfast...and that she fed herself. Baby led weaning isn't a new thing, I just guess that it's not everyone's cup of tea. 

So what's next? We are pretty much done for September now. G has an appointment with Dr Rao at the end of October, and she also starts swimming lessons mid October, but apart from that we'll just keep plodding on!

Ooo whilst I think of it, I just wanted to thank a fab friend of mine who swam part of the Thames for Turner Syndrome. What a super achievement. I also wanted to thank anyone who was able to show their support on jeans for genes day, especially my cousins little girl who kindly donated her tooth fairy money. So much support for our little 45x girl! 

Cucumber, holiday fun, and sleep troubles

Having woken up to the sound of the sea every day for 8 days, waking up without it now sucks! We've been home for nearly a week, but yet I'm ready to go away again. How I do want to be beside the sea...

Gracie's first holiday

We had a fantastic time in Cornwall! Grace was an absolute angel (sleep issues aside), and we all thoroughly enjoyed ourselves, especially the dog who made two new friends. The journey there was a bit of a nightmare. By bit, I mean a lot! The decision was made to travel during the evening. G always sleeps in the car anyway, so it made sense to feed her her bedtime bottle, and then set out around 6:30pm. How wrong we were. She did not sleep. Not at all. Three stops later, and she was a blubbering mess. We finally arrived around 11:30pm (after a getting temporarily lost down a pitch black, single track, steep hill), and it all became too much for G. She screamed the house down for nearly two hours. Thankfully the 13 other members of the house weren't too bothered. It started off as a pretty hectic holiday with the culmination of 15 members of several families (all friends!) sleeping amongst 5 bedrooms, a lounge, a conservatory and a tent, but it was still great fun. By the middle of our holidays it was just us, my parents, our friends parents and the three dogs. We introduced G to cliff walks, soft sand, and mildly warm sea, but what she loved the most was the sea breeze in her hair. Well, what little she has! Whilst we are happy to be home, I certainly miss the amazing views, superb walks, and having the beach at the end of the garden path.

Sleep deprivation

For the past 6 or so weeks, G has had extremely disturbed night time sleep. 3 hours is her best, if we are lucky. Dream feed (10pm) until around 1am is usually the best time. 1am onwards, nightmare. Sometimes she'll wake 3 times between 1am and morning, other times she will wake continuously, so much so that I have barely drifted back to sleep. We are CLUELESS as to what is causing it. I have several theories, and as always teething is at the top, but who knows. I am really starting to feel the effects of this now, and its getting me down. I can function on one or maybe two wake ups, but its been nearly two months since we had that few. Tim, like most men, is oblivious to it and doesn't wake, and to be fair to him he works darn hard at work and I wouldn't want him to be up all night as well. We cannot do the cry it out type methods as when G gets upset, it aggregates her reflux and then we end up in a viscous cycle of crying-reflux-pain-crying.Any ideas anyone? I definitely think its getting beyond the 'its a phase' stage. She is also very clingy at the moment, though that is more of a recent thing but may well be linked to her not feeling her best.

Poorly ears?

Many girls with Turner Syndrome suffer dreadfully with ear infections. For the last month or so G has bad extremely waxy ears, and endlessly tugs at them. I wonder if this could be the source of the sleep problems? She is also extremely congested and coughs a lot. What with the whole ear, nose, throat linkage, and Turner Syndrome, I have been debating taking her to the doctors just to rule it out. Tim jokes that I haven't been in at least a month and that they'll be missing me :)

Weaning update

Cucumber, tick. Pepper, tick. Chips (oops), big tick. Pitta bread, tick. Banana, bluh! Slowly we are making our way through some starter foods. It sounds pretty dull at the moment but I'm trying not to introduce   too many things at once as we need to be conscious of intolerances. G is extremely grizzly at the moment so it's hard to tell if anything is affecting her, but I'm keeping an eye on the nappies as they are usually her major indicators. I'm pretty chilled out now about giving her large chunks of food. She simply sucks on it, and if she's lucky enough to suck any of it off, you can see her moving it around her mouth until she spits it out. Many people worry about choking and baby led weaning/finger foods, though interestingly today we had a gagging incident and it was actually on smooth baby porridge, not the chunky finger food. A friend also talked me into trying her on wheat sooner rather than later (I have a wheat intolerance and wondered if G had inherited that as well as my cows milk intolerance), and no adverse reactions yet. Mind you I'm still waiting for the magic number two so I can double check. Nice!

What's next?

We have just had a letter through from Leicester hospital about arranging an appointment to meet with a gastroenterologist, so I shall be arranging that ASAP. I have also requested her reflux meds to be flavoured as we are still no closer to getting her to accept them. Next week Grace will be weighed again by the health visitor, and I'm pretty sure her weight gain will be as impressive as always.

So, Grace is now officially 6 months old. How time flies. Last week my work colleagues returned to school for the start of the new academic year, and it dawned on me that exactly this time last year we had just found out that there was a problem with the pregnancy. Little did we know that our babe was to have Turner Syndrome, and little did we know that she'd be an absolute miracle and be that 2 percenter who survived.....

Paediatrician update!

Finally the weather has cooled down a little bit. Though the closer we get to our holiday in Cornwall, the more rain we seem to be getting!

To our paediatrician's amazement.....

Last week we met with Dr R for Gs 6 month check up. We weren't sure what to expect, but what we hadn't banked on was Dr R's surprise at how well G is doing! 

Upon arrival G kept all of the other children in the waiting room entertained by energetically jumping up and down on the seats (the downside to loving her bouncer is that she now grabs every opportunity to put her little feet on a surface and jump!). She then screamed the place down when it came to being weighed. I couldn't believe it when Tim reemerged with a grin on his face and proudly announcing that she was now a healthy 16lb. 

Clinic was running late, but we soon saw a familiar face and were welcomed in to the consulting room. I was armed with a list of questions, but thankfully the Dr had plenty of time for us. The long and short of it is:

- G is being referred to a gastro paediatrician at  a different  hospital. Her ongoing reflux issues seem to be out of Dr Rs general paediatric remit. She had hoped that G would have grown out of this now, but unfortunately not.

- She will have a barium swallow study done to see if there are any underlying reasons for the ongoing reflux. 

- A prescription was written for domperidone which is a drug that will make her stomach empty faster, thus hopefully reducing the amount of material in Gs tummy to be sicked up (we hope!). Although as the two other drugs have proved, getting the actual medicine into her may be the biggest hurdle. 

- We should go full steam ahead with weaning, though due to the increased sickness from purees/porridge/rice, we should focus on finger foods and baby led weaning. 

- I need to take G to our GP to see if she can be referred to a podiatrist for some specialist foot care. 

Dr R will see us again in three months to see how things are. She hopes that the reflux will be a thing of the past, we do too! As for Turner Syndrome related issues, there wasn't really anything to discuss this time as she is doing so well. Yay for a healthy G :) 

Our first family holiday 

On Thursday we will be packing up the baby, dog, and house, and setting off for our first ever family holiday to Cornwall. We will be meeting up with my family and some friends, and are very much looking forward to relaxing, and introducing G to the amazing sights of North Cornwall. I cannot wait to smell the sea air and let G feel the sand between her toes. What I can wait for is the mammoth 5 hour journey, and a dog that is petrified of travelling. We'll be visiting the vets this week for some tablets to knock me, sorry, Winston out! I'm also not looking forward to packing. I've a list 3 pages long, but luckily Tim has a 6 seater transit van which could fit even the kitchen sink in. Phew!

Beating baby boredom

A brand new jumperoo arrived yesterday. It was a bargain price from Asda, and we are hoping that it may help to alleviate Gs boredom. She cannot sit still for a second at the moment, and unfortunately due to the ridiculous amount of vomit that shoots out every time she so much as wriggles, she's getting very frustrated. Her feet can't quite touch the floor at the moment, so the Next catalogue is doing a grand job of helping her to bounce in the jumperoo. She isn't totally bawled over by her new toy, and would still rather be 

in our cheap and cheerful door bouncer, but heyho we'll keep trying. 

So, next time I post, hopefully we'll be thoroughly refreshed from our hollibobs and ready to face the run up to Christmas (I know, did I really say the C word?!). Also, I have just read a book on baby led weaning, and am excited to get going with that once we return. Oooo and little moo will be 6 months old. HALF A YEAR! Wowsers.....

Weaning-a help or a hindrance?

It's still so hot. The baby still doesn't like it. I still haven't taken advantage of the tropical weather and bronzed myself!

Intolerant to carobel

I know that when we tell the paediatrician this, she will refute it. However, we are 99% sure that G is intolerant to carobel (a thickening agent made from locust bean gum). After refusing to believe that it was her milk causing the awful nappies and mucus, we experimented by taking G off of carobel several times. Within 24 hours her nappies were normal again, and no sign of mucus. Within 12 hours of putting her back on it, the explosions and mucus were back. It's a shame really as the thickener was really helping. She was hardly ever sick, and most of the other reflux symptoms had subsided somewhat. As the gp cannot prescribe any other thickeners (due to her age) we are now using baby rice, which is nowhere near effective, but a tad better than constant projectile vomit!

Weaning, the solution to our problems?

Guidelines are always changing. Wean at 4 months, wean at 6 months, weaning will help with reflux, weaning will cause more problems. So, at 5 months, and with G still point blank refusing her reflux medication, we've decided to take the plunge. Not three course meals and the like, but just some baby rice, maybe porridge and some tasters of fruit and veg. I understand the theory that more solids in the stomach will weigh down the contents, and thus resulting in less reflux episodes. I just hoped it would work.

Week 1 began with baby rice, thankfully no intolerance or reflux issues.

Week 2 saw the introduction of pear, less acidic than many fruits, and supposedly gentle on their tums. She devoured it! After 2 days, it was evident that it was going down a treat. However, at the same time the wheezing, coughing, congestion, constant moaning and squirming, extreme vomiting and screaming were back. At first I didn't link the pear and the reflux. Teething maybe? But after putting two and two together, and stopping the pear, it was evident that it was the culprit. Oh pants, I really thought that weaning would be our friend, not enemy.

After a several unsettled days (for both G and myself), I decided to man up, go back to baby rice, and google reflux friendly foods. Not quite so easy! Whilst there are obvious ones to steer clear of (citrus fruits, apples etc), many reflux babies react differently to different foods. Many can tolerate pear, some can't tolerate carrot, many steer clear of banana and broccoli. It seems that trial and error is the way forward, not something I am particularly looking forward to, but there's no other way of determining which foods do and don't agree with her. I'm starting next on root veg, surely I can't go too wrong?!

Rolling over milestone

For over a month now, G has been persistent in her perfection of the back-to-belly roll. She would even practice in her sleep! Well this weekend she finally mastered it, and we got to see this momentous occasion.....on video! G had only gone and picked our first weekend away from her to perfect it. Still, when we returned, she was a total show off and we got to see this occasion relived all of Sunday afternoon (and evening, when she should have been sleeping!).

First night away from G

As a celebration of our first wedding anniversary, Tim and I went away to Stratford for the weekend. We left G with nanny and grandad, knowing that she would be well looked after, and spoilt with love and cuddles. 

These days we can usually get G to bed with only a few tears, at least 5 days out of 7 anyway. Well G didn't fancy playing ball for my mum and dad, and played up on Saturday evening. Woops! We were assured that she was an angel for the rest of the time, and letting nanny and grandpa be the first to see her roll over more than made up for it. Did we enjoy our time away, or fret? Well we had a fab time, and I only text my dad two or three times. Doesn't mean I didn't worry, but I just knew that we needed to make the most of our time together. It was also Tim's  30th birthday, so a well deserved treat was in order.

Paediatrician appointment

Tuesday will be our first scheduled appointment with  Dr Rao. We have obviously already seen her in the early days due to Grace's milk and reflux issues, but this will be our first Turner Syndrome related appointment. We know that she will be weighed and measured, and that we will discuss her development so far, but above and beyond that we don't know what else to expect. Maybe some information on growth hormones? We definitely need to discuss her reflux medication and her nail issues.

For now we'll continue to battle with the heat, and to experiment with different foods, but we'll also continue to enjoy how fabulous she is. She is changing everyday. Her personality is developing, she is into everything, and she absolutely loves smiling (especially at the dog!). Regardless of the issues we face (albeit not serious, but testing at times!), we sure do have one beautiful babe! But then we are biased :) 

Back to square one!

I started writing this post on Monday...G hasn't had the best of weeks so I've not been good at finishing anything! 

Horrible heat 

I will probably get lynched for saying this, but we've well and truly had enough of the heat. G cannot cope, and nor can I for that matter! She's not sleeping at all, no naps, no regular bedtime, and being wide awake at 4am. Infact as I type this at 9:30pm she's wide awake after hours of screaming!

This time last year you'd have caught me out in the garden catching a cheeky tan, but not this year. I would however like the tan, just without having a melting baby. 

Reflux nightmare

For some unknown reason, after three weeks of relative calm, Gs reflux has returned. With a vengeance.  The wheezing, congestion, projectile vomit, screaming all evening, squirming, refusing some feeds. Our evenings are again taken up by viewing the local countryside....from the car. I'm not convinced her medication is helping one bit, and neither is the heat. But nearly 5 months in, surely we could be able to find a cure?! Or at least get it under control.

We are due to see the paediatrician at the beginning of August. Lets hope she brings her magic wand.

Ingrown nails

Girls with Turner Syndrome often have problems with ingrown nails. G had an extremely sore and slightly infected finger nail last week, which thankfully has gone of its own accord. However this week she has an even nastier toe nail. It appears to have grown into the side of her big toe and is rather red and swollen. What a bizarre outcome of missing a chromosome! 

Playing detective

G has been having showing some signs of intolerances this last three weeks. Given that she's only on super duper hypoallergenic milk, and milk thickener, there's surely only got to be one culprit of the two. The Gp suggested changing her milk, but after doing so three times already, I've decided to change the thickener first. Lesser of two evils and all that. After a week of no diarrhoea I'm now trialling the thickener again just to double check. This little monkey is going to be intolerant to everything at this rate. 

Happy times too...

G still beams at us first thing in the morning (albeit at 4am), loves to talk to us, and is getting more mobile by the second. She's loving her door bouncer, is extremely close to rolling over, and generally won't stay still. She even engaged in some wrestling with her buddies whilst us mothers sat and drank coffee (and took plenty of snaps of course!).

My aim for the next week....To continue to enjoy the weather, yet keep my monkey cool, and enjoy the good things to come: Mine and Tim's first wedding anniversary next weekend. We are going away for the weekend and leaving G in the capable hands of nanny and grandad. Lets hope things have got better by then!

It's also Tim's 30th birthday soon. I still stand by the fact that bringing our little sausage into the world is his birthday/anniversary/Christmas present for at least the next year! 

Remembering how blessed we are

It's been over two weeks since I last blogged and we've been super busy. At 18 weeks, G is changing everyday. She's desperately trying to master new skills such as sitting up unaided, rolling over, and thumb sucking! And she's now become an expert in cooing, babbling and bouncing. 

Counting our blessings

This last week I've very much been thinking of a family and the sad loss of their brave daughter who had Turner Syndrome. This family I do not know, but I do know of them due to a friend. They sadly lost their daughter at 9 days old due to complications with her kidneys and lungs. This beautiful babe battled against the odds during pregnancy, as all Turner  Syndrome babies do, but sadly was too unwell. I've thought of them every day since, and its been a stark reminder to us of how truly blessed we are to have a healthy G with us. Several times this week I've just sat and watched her, amazed at her battle, the odds, and how much of a miracle she is.

Piling on the pounds

This week G was weighed, and thankfully at 13lb 14oz, she is still doing well. So well infact that she has made her way from the 2nd percentile to the 50th. So well infact that they are now keeping an eye on her weight due to the rapid increase. So we've gone from having a tiny baby, to one that's packing the pounds too quickly.... Hmm. Given that she is feeding roughly 10oz less than other babies of her weight and age, we are slightly baffled! We will see how things are at her next weigh-in in 4 weeks time. 

Kidneys in the clear

Two weeks ago we took G for a repeat kidney scan. Given that we initially didn't realise she had a minor kidney issue when she was born, I was a tad apprehensive about the scan (Tim was taking it in his stride!). Upon arrival I asked what Gs previous issue was, and apparently the tubes from her kidneys to her bladder were slightly too wide. Thankfully the repeat scan showed that this was no longer an issue. Phew.

Cot catastrophe!

G has finally outgrown her Moses basket, so on Friday we decided to make the break and put G in her cot. She has been in her own room for about a month now, and her basket has been perched inside the cot, so we presumed that the final transition would be easy. How wrong we were! Three hours sleep. G decided that her new found space would be best used for rollover practice. As she can't roll properly yet, she spent the entire night getting very frustrated and not to mention ridiculously over tired.

Last night both of us felt pretty rough and couldn't handle another sleepless night, so G slept in her basket. Peacefully. All night. 

G 1- Cot 0

Medicine nightmare 

G is still trying every trick in the book to refuse her reflux medicine, and it's working. Her dosage has been halved due to then increasing the strength, but it's made no difference. As a last attempt I'm going to hide it inside some pear purée, but she's pretty clever and instantly recognises every other disguise we've tried. We'll see how pear goes down...

We have a relatively quiet week ahead, though I'm excited about taking G to school to watch my old class's assembly. That aside we'll probably be doing our best to avoid the heat, poor baby is not a lover of it, what baby is! 

Naps, dream feeds and Tim's first Fathers Day!

16 weeks since our little monkey arrived and I finally feel like things are starting to settle down. I no longer feel like a rabbit caught in headlights, but instead I feel we are getting into a routine and that things are starting to improve....

Naps

When do these super mums do their housework, washing, ironing, and generally catch a break? During nap time.... Oh, well they really must be super mums then as G only naps for 20 minutes! 

I'd started to think that part of Gs grumpiness could be down to lack of sleep during the day. We had no pattern as such, she just fell asleep whenever. It was time to start looking for her sleep cues, and enforcing a napping schedule (I use the term schedule loosely!).

Initially it felt like a losing battle, nap times were still no longer than 20 minutes, and she fought going to sleep. However, a week on, I've learnt she needs 3 naps per day, usually around 8am, midday and mid afternoon, and she's starting to nap for around 45mins-1 hour. When she's awake she's also a lot happier. So has Tim come home to a cleaner house with piles of freshly ironed washing? Hmmmm, not yet! 

Dream feeds

14 weeks in and I was shattered. I couldn't take the night feeds any more. I was miserable, and had no energy. So we decided to think about dream feeds.  G was feeding at 6pm, and due to her weight and relatively small feed amounts, wasn't making it much beyond 2/3am. Dream feeds involve feeding baby whilst asleep, at around 10/11pm, and aim to get them through until morning. The first few nights G was still waking around 3am, but we figured it was her body clock as opposed to hunger. So we persevered. The wake up times gradually moved to 4am, and more recently, 5am. Luckily when she now wakes around 5-5:30am she is happy to babble away to herself until I feed her at 6am. Last night was the first time in ages that I had a solid six hour sleep. I feel....rough, haha, I guess I need to adjust too.

Father's Day and family fun 

We had a busy weekend what with my nans 90th birthday party on Saturday, and Father's Day on Sunday.

Saturdays antics involved a 300 mile round trip Sussex, and catch ups and G cuddles with family that we hadn't seen in years. G behaved very well, was happy to be passed around, and was an angel for the 7 hours or so that we spent in the car. She did projectile vomit on me on the way to the party, and whilst she had two spare outfits, I had none, but luckily Chanel perfume did a good cover up job! We had debated whether to go on Saturday due to the long journey and taking G into a care home (germs and what not), but I'm sooo glad we did. Not only did she meet both of her great grandmas on my side, but I saw aunts uncles and cousins that I hadn't seen in far too long. We must meet more often!

On Sunday we went for breakfast with Grandad,  and then a BBQ with Grampa. Tim very much enjoyed his day, and loved Gs gifts of: a man tin for nuts bolts screws and general crap; an 'I love daddy' mug; his favourite choccies and a personalised mouse mat with Gs gorgeous pics on. What a clever girl she is :)

Dietician

Yesterday I went to see Gs dietician. It wasn't  the most informative  of appointments, however we have concluded that G definitely has a full on cows milk intolerance (not just lactose), and should not have anything containing milk until we meet again when she is 1. With this in mind, I was given information regarding weaning, things to avoid, and a recipe book for meals that can be made using her formula. I won't be tasting those! 

Formula and meds

"When did you last hear Gracie strain and grunt all night long?"

"Well, I can't remember actually."

"Ok, well when did she last scream all evening?"

"Errrrrr..... A few weeks ago?"

We hadn't realised it, but Gracie's formula has actually been making a huge difference. She's been in it now for nearly a month, but over the last week things have really improved and her tummy is a lot more settled. Even the reflux is starting to get better. Speaking of reflux, I have just picked up a new medicine to trial (omeprezole). Hopefully it may banish, or at least control her reflux for the foreseeable future. 

What's next for Gracie?

Next Thursday we have a double whammy-Gracie has a kidney scan, and her jabs. We didn't realise it, but at her last kidney scan, it was picked up that her kidneys were slightly dilated. I don't think that it's a problem as it wasn't even mentioned to us, but the paediatrician just wants a repeat scan to see how things are.

As for the jabs, we all know they cause days of upset, but are for the best in the long run. Lets hope it doesn't knock her new nap schedule or improved evenings.

So, a very positive blog entry! I know that things won't always run smoothly, but we've had a pretty good few weeks. We've only had 2 or 3 car rides in the past two weeks, and generally she is falling asleep by 8pm. I even did the ironing the other night, that's a first!!

On a different note, a lovely friend of mine is taking part in an open water swim this weekend in aid of Turner Syndrome and another charity. She will be swimming two miles, something I can't even comprehend. Good luck Lucy!!

No I don't cover her face during nap time, she does!

Triathlon success, new formula, super weight gain, and a break through?

Birthday surprises

It was my birthday on Friday, and aside from being super clever and getting me a photo card and flowers, G gave me the best pressie.... a huge weight gain!

Up until now she has hovered around the 2nd and 9th percentile, and thus has been deemed as 'low' weight. To continue on the 9th percentile, Tim estimated she needed to weigh around 11lb. I thought that was optimistic, 10 and a half maybe. So imagine our surprised on Friday morning when the health visitor told us she was now a whopping 11lb 13oz!! Also, she had moved up to the 25th percentile. What a chunky little monkey :) That truly made my day. The health visitor will be back in another 4 weeks for a weigh in and check. 

The rest of my day followed suit - G had some quality grandparent time and me and Tim got to go shopping. Then later on we went out for dinner with my family. It was my sister's birthday too, so delicious food and drinks were the order of the night. Though only 1 glass of prosecco for me due to night feeds! 

Bob's triathlon

Last Sunday my brother took part in his first ever triathlon. He's super fit and pretty good at running and cycling, but  was very nervous about his open water swim (I was too!). We went along to support him, along with some of his friends, and were all fantastically proud. Not only did he come out of the swim event in 4th place, but he completed the triathlon much quicker than expected, and raised over £800 for the Turner Syndrome Support Society. It was a beautiful day, and G very much enjoyed cheering on uncle Bob.

New formula

Around ten days ago I spoke to Gs paediatrician again. She was still having the most disgusting explosive nappies, and having mucus in them (gross, but all signs of milk intolerances). Not to mention the horrendous screaming fits every evening, and reflux issues. Having already been put on a semi hypoallergenic formula-it was still made of cows milk, but had the lactose removed and the proteins broken down-the paediatrician concluded that grace couldn't seem to tolerate cows milk at all. Within an hour she had spoken to our GP and Gs new formula was ready to pick up. We were warned that Neocate tasted foul, but it was the BEST of the best and contained no dairy at all. Ten days later and some of her symptoms have subsided, however there was absolutely no change in the horrendous screaming evenings.......until last night....

Lulling us in to a false sense of security?

For around 10/11 weeks our days have pretty much gone like this:

Morning=happy, smiley baby, except a bit of reflux

Afternoon=starting to get grizzly

Teatime (usually 4/5/6pm)= our baby replaced with screaming baby who can not be consoled

Evening=driving for several hours to calm her down

9pm=G falls asleep and we transfer her to her Moses basket. We finally eat, and crash.

Well last night she broke that mould! She did start her grizzles, but after her 6pm bottle she got all sleepy (instead of screamy). So I gave her cuddles, kept her upright for the usual 30 minutes, and then we braved putting her to bed. Having tried this many a times before, we were sceptical, the screaming would most likely start. It didn't! Yes we had to keep putting Ewan on and popping her dummy in, but she was upstairs and quiet. 

What did we do? Cooked and ate dinner, without indigestion. Watched several TV programmes the whole way through (including BGT and the already infamous egg throwing incident). Then we ate pudding. Not an A-road in sight. Such simple things, but what a fantastic evening. It almost topped the beautiful birthday meal we had the night before! 

Is this a turning point? Who knows. The new formula may be working, or she may have just had a good day. I guess we will see tonight.

I should also add that Gracie is now in her own room too. No more animal farm noises in our room!! Granted, I can still hear them across the hallway, but they aren't nearly as noisy.

What's next for us? A dietician appointment in two weeks time, and a discussion with Gracie's paediatrician regarding her medication. Her reflux is still very much an ongoing issue, though I am hopeful that with time, her new formula may help this. The game of trial & error continues.

A week of firsts

This week has been a week of several firsts, some for G, some for me. Some causing immense happiness, others causing misery for little moo...

Gracie's first cold

On Wednesday G just would not settle. Day times are usually her happiest, but not this time. She was grizzly, hungry and nothing would settle her. One car ride later, and we thought we'd cracked it, it was 9pm and she had dozed off. Then I heard a sound on the baby monitor that made me want to investigate. After taking a leisurely stroll up to the bedroom, I found G choking in her Moses basket. After several slaps on the back, and several more choking episodes, I found the culprit. Snot, and plenty of it. G had developed her first cold.
This night become another first....the first time we had ever ventured out in the car beyond the evening, in to the realms of the night. It was midnight, and we were heading for the M1! It was also the first night that we really did have no sleep...the odd wink here and there, but that was all. How Tim made it though work the next day I don't know.
G is starting to get over her cold, and I have every baby cold relieving item that I could lay my hands on. Snuffle babe vapour rub has to be my favourite (baby Vicks for those of you who are wondering). The smell takes me back to my childhood :)
I might add that choking is not uncommon for her, it's more of a regular occurrence, but we know how to deal with it. It doesn't make it any nicer to see or deal with, but it seems to be yet another symptom of her reflux.

Sleeping though the night

Last night, for the first time in her little 12 week existence, G slept through the night! 9:15pm until 6am. For any parent reading this, you will no doubt be remembering your first time too, probably because it was the first decent nights sleep you'd had in months. I must admit I did wake briefly in the night, slightly bemused at the fact that I hadn't heard her little screams for milk, but after hearing her breathing peacefully I fell back to sleep.
I don't expect that this will happen every night, but I know that she can do it. And to be quite honest, the amazing 7 hours of sleep that I had is enough to get me through the next 12 weeks..... Well, the weekend maybe!

First bath by mummy (without daddy's help!)

Caution, Slippery when wet.... A warning that should come with all babies! Up until this week I'd always wait until Tim was around to bath G. However this week G decided to treat me to several explosions, most of which required immediate bathing. So I thought 'man up Rach, it can't be that hard'. It wasn't. Ok she wriggled and squirmed, squealed with delight, and screamed when she'd had enough, but it was ok. The fact that she smelled like a Johnsons baby factory afterwards made it all the more worth it.

Back in the car again? 

I had mentioned venturing out in the car, and you may be thinking 'but what about the mamaroo?!' After our initial delight at this fantastic contraption working, we found that Gracie would only settle in the mamaroo for a short time. Once in the full throws of her screaming fit, it no longer had effect.
Put her in before she starts? We've tried, but sooner or later the screaming fit does come. It does however buy us enough time to cook, and usually eat our dinner. For that I am thankful!
So many people have been kind enough to tell us ways that have helped to soothe and settle their little ones, and we've been been more than happy, enthusiastic even, to try every suggestion. But they just don't seem to cut it. A real life car ride is the only thing that works for her. Either we need to get her meds and formula altered soon, or she needs to grow out of these reflux and milk issues. Poor little monkey must be fed up of the pain!

In support of Gracie and the Turner Syndrome Society

This time next week my little brother will be taking part in his first ever triathlon in aid of Turner Syndrome Support Society. He is very close to reaching his £500 goal, and we are all really proud of him and how he wants to support his little niece. The race is pretty local to us, so Gracie is looking forward to cheering him on!

What does this week have in store?

Gracie has her second lot of jabs, another hospital appointment which apparently is for an echo, and hopefully a conversation (or even an appointment) with the paediatrician to discuss her current treatments for her reflux and milk intolerance. The current provision is having no effect whatsoever. I have also had a letter through to make our first appointment with the dietician regarding the milk issues. Aside from the medical stuff, we are going to enjoy bank holiday with Winston and daddy (sunshine please!), and have more coffee and cake with friends. It's a good job I've started going to the gym, at this rate I'll be growing a cake baby!!

It's a good job that Gracie, daddy and Winston are snoozing their heads off beside me right now, I've enjoyed a lovely brew, and keeping you guys updated :)

Heart scan results

11 weeks old and changing every day!

Heart scan

Finally the day of the scan had arrived. I was a tad nervous, but knowing how well the scans had gone during pregnancy, I had faith that all would be ok.

We were very much looking forward to seeing Dr Archer again, and this time we didn't have to travel down to Oxford. One less petrol cost!! Upon arrival we noticed that it said 'Dr Archarya's clinic on our letter, and we started to wonder whether she'd be having her heart scan at all. Thankfully, a few moments later we saw the familiar face of Dr Archer, and realised it must have been a typo!  Despite the cold gel and having an unfamiliar face looming over her, G was extremely well behaved during her scan. Her aorta had not narrowed (a potential complication in Turner syndrome), and all else was well. 

She does have a small leakage of blood between two chambers, but this apparently can be quite normal in newborns.  Given that he doesn't want to see her again until she is 1, we weren't about to start worrying.

No more driving....

She's stopped screaming in the evenings? Not exactly, but we are hoping to spend less time in the car due to a fantastic contraption that has been loaned to us. We trialled the mamaroo last night,and so far so good! Basically it is a seat that is supposed to simulate a car ride (along with a few other motions such as a kangaroo!). It kept G settled for around an hour, and allowed her to become sleepy enough to be put in her Moses basket afterwards with NO screaming....I know, hard to believe.

Her reflux still plays her up in the evening-we can often see and hear her chomping on the acid-but for some reason a car ride is still the only thing that will settle her.

Anyhow, we hope the novelty of this contraption does not wear off as we're quite excited at the prospect of enjoying evenings at home again :) 

A day with nanny and grandad

We were lucky enough to be invited to our friends wedding in Bath this weekend. Whilst babies were invited, we felt that it would be better to leave G at home with family. 

It was a beautiful day, and the happy couple looked amazing, but towards the end of the day I had started to get anxious and felt the need to come home. After enjoying a delicious meal, we decided to make the two and a half hour journey back.

Apparently G had been as good as gold and had several trips out (including to Cafe Nero), though come 5pm the screaming started! Mum and dad had hoped that a long walk with the dog would settle her enough-we know it doesn't-but low and behold, the screaming started as soon as the walk ended. We returned home around 9:30pm to find that they had resorted to driving up the A14 to settle her. What a little monkey!!

Normal baby things

G is developing well, and on a recent visit, the health visitor commented on how well she is doing. She is holding her head up (with the occasional flop!), smiling away, cooing, and very much enjoying the fact that she has discovered her fists. 

We like to keep busy during the days whilst Tim is at work, so attend regular baby groups, and the occasional coffee and cake session with my 'mummy' friends. 

It is really easy to forget that G has Turner Syndrome. She is doing so well. Apart from the reflux and cows milk intolerance (both of which we hope that she will grow out of), she appears to have no further complications at the moment.

Growth

We do need to start thinking about the issue of growth hormones over the next 6 months or so. Our geneticist informed us that G can start these as early as 18 months, and it is something that we are extremely interested in. We want to give her every possibly chance of growing as tall as possible (which in the case of somebody with TS, is around 5ft max with the help of hormones). That aside, we have very little else to think about over the coming year, except possibly teething and crawling! 

Here is a picture of how well the mamaroo soothed Gracie last night...

Things they never told me about being a mum......

I've learnt a lot these past 9 weeks, and there is still a wealth of things that I need to learn. Here is a snapshot of the things I wish I'd been prepared for....

Babies cry...

.....for hours on end, and there is nothing you can do to soothe them. Granted, not all babies do, but mine does. Her reflux and cows milk intolerance plays havoc with her poor little body, and the days of 4/5 hours screaming constantly, are still not behind us. The new milk and medicines haven't quite kicked in yet, and we are unsure of if they will, or whether she'll need to have them changed.

Increased petrol costs

The only thing that gives us a break from Gs  screaming is the car. We are spending hours on end, most nights, driving around just to settle her and catch a breather ourselves. Last night we found ourself going out twice, and ending up heading for the motorway. We have had more drive thru dinners than we can count. Not such a bad thing, said my sister? Yes, I just want a normal dinner at my dinning table. I even want vegetables! And those of you who know Tim would be shocked that he is now sick of KFC :)

Battling with GPs

Some (but not all) GPs think that I'm an over anxious first time mother. I have had endless phone calls and visits to the surgery reception, trying to get the formula and medicine that the Paediatrican had prescribed for my baby. The current battle is to get her stuff on a repeat prescription so that we don't risk running out, and that I'm not constantly speaking to different Gps and receptionists pleading for another batch of her meds and formula.
The one GP who has been fab, probably because she used to be a paediatrician and also knows about Turner syndrome, is about to start maternity leave. Rubbish or what?!

One solution often causes another problem

The new hypoallergenic formula is causing G to be sick left right and centre. It's so thin and watery that its like heaven to her reflux-one small burp, hiccup, or even a tiny movement, and G, me and often the floor are covered in sick. I'm now on a mission to get hold of a natural milk thickener to try and combat this problem. The GP told me to give her gaviscon. It constipated her, so no. He told me to experiment with quantities. Seriously, everything feels like an experiment right now, and I'm crap at science!

Just because one problem is diagnosed, doesn't mean that other unrelated problems won't occur

We were as prepared as possible for the potential difficulties relating to Turner syndrome. What we weren't prepared for, was difficulties that weren't! Saying that, general digestive problems are more common in TS girls, so I guess I'm wrong to say they are totally unrelated. Still, reflux and a cows milk intolerance weren't on the cards, and little did we know that they could cause sooo much pain for our little one.

You can feel so low, yet love your little one so much

This past week has been the hardest yet. Introducing the new milk was a challenge in itself. She hated the stuff, and I've tasted it and don't blame her! I also had a battle with the pharmacist to get her ranitidine medicine for her reflux as apparently is ridiculously expensive. He even wrapped it in bubble wrap incase I dropped it. I battled to get it, I wasn't about to smash it on the floor....
Some days I'd love to drop her off to anyone who'd have her, and go out and pretend I didn't have a care in the world. I could cry all day and night. Post natal depression? No, I just have an extremely difficult baby (not of her own fault, I know) and everything at the moment is a daily battle. We will have a happy baby eventually, and I will not dread the days, or more so the evenings, and Tim won't need to bundle us all in the car to Save our sanity. Tim as always is still amazing, but some days he sees the battle we have, and it even gets to him.

Don't get me wrong, our little one is our miracle, and we will always love her to the moon and back. Her gorgeous smiles erase any trace of the difficulties we face. Sometimes it's just hard. This morning I was vomited on, followed by a massive gorgeous grin. She's a monkey, but she's our beautiful little monkey.