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 :)