Thursday 28 February 2013

New FXS Research Break Through

I follow the National Fragile X Foundation Facebook page (the US organisation helping spread the word about FXS and support research and education) and saw this article today: http://www.fragilex.org/2013/public-policy-and-legislative-advocacy/ground-breaking-genetic-research-gives-hope-for-potential-treatment-of-autisms-core-symptoms/

Of course I know it will be years before anything makes it to the general public, let-alone kids here in Australia but my heart certainly did skip a beat.  How amazing would it be for Autistic and FXS kids and families to have even some relief from the symptoms. 

I watch Connor stuggle everyday with learning even the simplest things, and trying to understand how to interact with the world around him.  I wish an easier path for him and the ability to communicate all the amazing thoughts and feelings that I know are swimming around in his mind.

Merryn is doing so very well with her development but I still see her heightened anxiety coming out and her struggle to learn this funny thing we call language.  It would be so wonderful if she didn't have to spend her whole life dealing with the anxiety and depression that so often plagues our FXS girls.

No matter what happens, they are my beautiful children, but if this research ends up making their lives just a little bit easier then I'm all for it!

What Blog?

So I don't want you to feel unloved, I often think I really, really need to get on my blog and write about what amazing/crappy/are you kidding thing just happened.  But quite often even the simplest things are just too hard.  There are days when all I manage is feeding the kids the 101 meals a day they eat, changing their endless stream of poo and watching taped episodes of Castle and NCIS.

So while I have big plans to be far more consistent with everything (weight loss, exercise, blog, housework, craft, etc) this year, I know you won't be surprised if I'm just..........not.  :)

But enough rambling, it's all about the kids and the kids are doing great.  We've had another sleep clinic visit, Connor has start Kindy and Merryn has started Day Care.

The sleep clinic visit involved me explaining that the sleep was exceptionally bad, that Andrew and I were both crashing from lack of sleep as our two kids spent all night fighting for our attention and we really needed to check out something a little more 'hard core'.  A new strategy was devised that involved Phenergan.  Basically we used it for a few nights running, then went to every second night and now it's used in times of need.  The result has been our kids learnt what a full nights sleep was and they have both responded wonderfully.  Merryn is practically a 7pm to 4:45am girl every night now, and Connor still has his bad nights and evening wanderings but will often sleep from 10pm through to 5am by himself.  I know people frown on using drugs, but in our case it was just what we all needed to establish a new and happier routine.  Cross fingers and touch wood we've finally turned a corner on the sleep issue.

Kindy and Day Care have been a revelation.  I was very panicked about them both going but with a few teething problems they are both thriving.  Connor is picking up some words and Mezy is having a great time running around with the other kids.

Well I'm going to have to cut it short there, there is heaps more to share but it's time to find some more food for my little Hobbits.  I'll be back soon to tell you some wonderful Kindy stories about Connor and some new classes we are doing to help the kids speech.