Sunday, December 29, 2013

Merry Christmas....

Happy New Year

and
Off to Adelaide we go!!!

It's been a busy Christmas and new year season.  With Miss Aerynns health being so topsy turvy and us not knowing what is happening it's really killed a lot of the jovial feelings we were hoping to foster.

We were hoping to have a HUGE Christmas and New Year season and celebrate with a heap of deliciously unhealthy foods and lashings of naughtiness on top of naughty, but in the end our hearts were not in it. 

Christmas 2013
Our Bricknell Brats
I know some may see it as being negative.  The truth is it just is what it is, this is our reality.  we tried to force things but it felt wrong.  So instead we floated around and did what time, inclination and the kidlets would allow.  The Christmas tree went up 3 days before Christmas and is currently in the process of being pulled back down again.  The children are playing happily with their respective Christmas gifts and having a lovely time....  meanwhile hubby and I are in the background trying to soak it all in, enjoy seeing the kids play and not worry, whilst we do the worry for them.

It's been extra tough not having family with us this year.  But skype and facetime have helped ease what distance has taken away. Toby and Aerynn both fight over who will talk to Nanny on Facetime - both love the attention and the camera ;) 

So it is the new year in just a few more sleeps.  The new year is kinda scary at the moment...  Will it being with it the answers we have been so desperate for? Will it being a diagnosis of Type 1 diabetes as expected or will the endocrinologists come up with some other explanation for Aerynns brittle blood sugar levels?  And the fear I have shadowing me all the time... when will Aerynn get sick enough for treatment for these high blood sugar levels, or even will she (yes I still live in hope that she will "normalise"

We had a call from the Adelaide endocrinologist the week before Christmas wanting us to be there within 2 days for an appointment.  It was impossible.  At the time both our cars were playing up so there was no way we were going to be able to physically make it even if it wasn't a case of horrible timing. Instead now we head up January 15th for an appointment on the morning of the 16th.  It's a little daunting in that it is a new set of doctors, a new hospital to attend...  Fresh eyes means fresh ideas and hopefully answers...  this HAS to be good!!!  Just has to be a new opportunity to work out what is happening :)  I'm trying to be positive... trying trying trying :)  We are being thankful that for the moment our little Miss is having more good days than bad..  her sugars are still up and down like a yo-yo, but we're accepting of that now, that's just Aerynn ;) 

So heading into the new year we are being positive!  Miss A has put on a great amount of weight this year in comparison to the previous 12 months, her growth in height is still slower than average, but she has still recorded a good gain compared to last year :)  She has shown she is incredibly bright and doesn't miss a thing!  her speech and comprehension is beyond her age and she has become a regular little social butterfly.  She has such character that most who meet her fall instantly in love with her twinkling eyes and contagious smile... she really is a little go getter... She is still in pre-walker shoes (gone from a size 1 pre-walker to a size 4-5 though!!!) and still hasn't got a proper full head of hair, it's still wispy fine and you can see her scalp through it, however what she has got has finally grown in length so she looks like a little girl :) and she is now able to wear all the gorgeous size 1 clothes we have had in storage waiting for her all this time :)  She is able to now eat most foods, growing at her own rate, she is thriving for all intents and purposes.  Aerynn is taking all her tests, appointments and her hospital stays in her stride and we are in awe on how well she is coping in comparison to us adults!  LOL  I know she has no concept on what it all means yet, and we are hoping that no matter what her ultimate diagnosis that it wont be too big a deal for her as she has been dealing with this from day one...  Just hoping that we are edging ever so much closer to having answers for her, answers for her siblings who are struggling from time to time with things, and also for us so we know the best way to move forward not just for Aerynn or our family but for everyone who loves and cares for our little girl... So with that we say  Bring on 2014...  :)  it just HAS to be better than 2013... seriously, it has to be!!!

Sunday, December 1, 2013

Struggling with the "D" word

It's petty... it's just a word but we are struggling to get our heads around it.

I've conversed with people about this word, fought had against stereotypes concerning it and cried tears for those lost due to it or fighting hard to fend it off...

It's not new to me.

but for some reason I never ever thought it would be something we are dealing with, and will be dealing with...

Something we will be dealing with 

 
Each. 
And. 
Every. 
Day. 
Of. 
Our. 
Daughters. 
Life




I know it's callous, but I thought it was something that other people dealt with...

we were somehow immune...  

we'd never have to even think about it...


Think again

It's here

It's making my little girl sick


She needs to get sick before she can get better



Diabetes SUCKS!!!!