Friday, November 29, 2013

Restoring Hope

Yesterday I had the pleasure of attending the Imagine More Conference here in Canberra.  I only attended Day 2 with hopes of collecting ideas on how we can create an inclusive environment for Ayla, especially at her mainstream school.

There were some great sessions to listen to from learning about segregation to creating communities around our kids, inclusive education, modifying the school curriculum, the NDIS and advocacy.  I have lots of ideas written down to come back to.

But the interesting thing is this .....I had an almost devastating lightbulb moment within the first 3 minutes of the morning welcome!!  It set the tone for the rest of my day and at times left me feeling completely bereft and a little desperate to fix it.

Jan Kruger (of Imagine More) began discussing HOPE.  In an instant, my stomach dropped, my heart sank (and hurt) and a lump formed in my throat as I suddenly realised ...."I've lost hope".  Over the past 18 months I have been gradually losing hope for Ayla ....or perhaps losing hope for the plans and goals that I set for her.

It has been tough to realise that all of the ideas and plans that I had put in place when she was a wee one, just weren't happening and possibly wouldn't.  We still have no clear communication method with her and I consequently have no idea of her cognitive capacity.  I nearly cried ...several times.  Ok, there were a few tears in the bathroom and again on the way home in the car.

All of this has led to me one conclusion.  I can't plan anything, until I have yet another go at finding a reproducible way to communicate with Ayla.  Once we have communication (on some level), then I can start to make new plans and goals ....bigger plans and goals.

And just a little update on Ayla:
She didn't have tonsillitis!  LOL  No, she had Hand, Foot and Mouth so badly that she had to be hospitalised because she couldn't eat or drink.  She's been very irritable and crying most of the day for 2 weeks now (despite the HFM being gone) and she has conjunctivitis as well.  It has been very challenging.  The neurologist suggested that her current symptoms are consistent with viral meningitis (as a result of the HFM) and thinks that as well as fatigue, she is probably experiencing headaches and that it could last a few weeks yet.  She has had a good day today but we will see what the weekend brings.

Sunday, November 17, 2013

My Poor Big Girl

Ayla is currently up at the Canberra Hospital.  The poor little kid has been sick for a week now.  Not just a cold or flu.  It's the end of the school year and we pushed her a little harder in the last couple of months with hydrotherapy on Friday afternoons, she had her ABR workshop in October and on returning, we have increased her therapy too.  It was clearly not our brightest moment.  She's so rundown and exhausted that she currently has tonsillitis, middle ear infection in both ears, conjunctivitis and a huge cold sore.

It has been really challenging with 2 different antibiotics plus prednisone and still no response.  She hasn't eaten in a week.  This morning we made the decision to take her back again and Steven contacted me to tell me that they had knocked her out with a painkiller and filled her full of more steroids.  She still may be admitted.  So many drugs in such a tiny little body.  I have absolutely no idea how I'm going to clean up after all of that.

Although I know that Daddy is with her, it's hard being at home while she's in hospital, but Billie still needs her sleeps and a hospital is no place for the healthy.  There's no point in having Billie bring something home as well.  There's precious little sleep to be had as it is.

So I think that there will be at least another week off school and very little going on in Ayla's life for the rest of the year.  Roll on January ....can't wait to spend a few weeks at Mum and Dad's place, hanging by the pool with the kids.