Conference time!

TSSSConference2014

Wow, what a weekend, we are physically and emotionally exhausted! G is suffering the most out of all of us - she's lost her voice, caught a cold and is extra stroppy. Can't say that all my sympathies go out to her... she chose not to sleep ALL weekend. By not sleeping, I don't just mean the odd crap nap and a few wake ups, I mean she DIDN'T SLEEP. I guess I'm being a tad harsh though. G cannot cope with change at all, and we should have known that taking her somewhere unfamiliar with lots of new faces and without her best canine bud Winnie would be problematic to say the least. Sleep aside, we had an amazing weekend (including my parents who joined us), and have already booked our room for next year......minus G.

So what did we learn?

We were lucky enough to be able to attend seminars and workshops ran by some incredibly knowledgeable medical experts, including a Dr from Great Ormond Street Hospital and a professor from ULCH. Topics covered included glue ear, lymphoedema, general TS management, hormone therapy, and fertility.

But by far the most important advice came from parents themselves. People who have been there and done that.People who understand. People have fought the same battles we are currently fighting with medical professionals. People who 'get' G.  Each and every one of you and your girls are amazing.

The weekend was invaluable, and my head is still a swirling mess of emotions, plans, and questions. Having had a few days of turmoil, I've now had to devise an action plan to make sure that I focus on the here and now, and not the 'what ifs' and 'what might bes'. So, our action plan consists of......

1. Get G referred to an Ear Nose and Throat consultant - I will not let recurring ear infections lead to long term hearing loss, if I can help it.
2. Check if G does have lymphoedema, and get referred to a lymphoedema nurse.
3. Get G's melatonin levels checked. Those who are avid followers know our plight regarding G's sleep. She doesn't sleep. Most days we run on empty. How hubby runs a business, and I educate 32 children, I'll never know!

I also met a group of families who are fairly local to us, and hopefully in the coming months we will be setting up a friendship group to enable us to meet several times a year for support. I'm extremely excited about this!

Due to G's sleep issues, we did miss most of the 15th anniversary ball, which I am gutted about, especially the show. I hear the dads dance was a sight..... Maybe next year I can get hubby involved!

So, that is us and our weekend.  I am already excited about next year :)

Before I sign off, I have to say that our attendance at the conference would not have been possible were it not for two incredibly generous local charities who joined forces to cover the cost of the entire weekend for us.How humbled we were to receive your donations. In fact as I type this, I am also compiling a PowerPoint which I am presenting to one of the charities tomorrow night. The teacher in me has turned a short talk in to a 16 slide Presentation, complete with pictures. I'm not sure they know what they are letting themselves in for!

Ta has become....

.....'Thank you mummy'

'Sit' has become 'sit down daddy'

'All gone' has become 'empty, finished'

Her thin, whispy hair has become thick masses of golden curls

Her chubby little arms & legs, her little pot belly,  have become a tall, slender frame (how ironic that I consider her tall....)

A snatched 'cug' has become a longer lasting 'cug and kisses'

Our tiny baby has become a mind-blowingly articulate little girl, who can be so incredibly stubborn, and amazingly affectionate in equal measures.  

                         ~

I cannot wait to meet many more incredible Turner Syndrome girls, women and their families this weekend at our very first annual TS conference. So hopefully the nasty germs that had taken over our household have kindly done one....!