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!!