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.....