Monday, November 29, 2010

Off we go

Well tomorrow we head up to the boat to go over to Melbourne in search of health. I'm excited and nervous!!

I'm excited because we are doing something instead of just sitting around waiting for the next time Willow gets sick, I'm also excited to see a few old friends. 

I'm very nervous to be away from the excellent medical care we have here, i know once we hit Melbourne we'll be alright but the boat makes me nervous as Will isn't 100% at the moment anyway.  But I'm sure it'll all be fine.  Is it over the top to be thinking about exploding a can of Glen20 in the cabin on the boat before taking bubby in there?  ;)

oh and if i have enough left over on our last day I'm going to take Willow to the zoo, oh i would love to see her face when she see's just how big a real giraffe is or a Lion, do they have hippos??  that was one of her earliest signs.  I'm sure we'll have lots of fun whilst away to.

So bon voyage and I'll hopefully be able to update you on our trip whilst I'm away

Friday, November 26, 2010

My mum loves to make things pretty

Yes it's true i do like to make things pretty, maybe not to most grown up tastes but i like to make lasting childhood memory's out of simple things.

The Big Girl's Room

Miss Willow's Room
With her sunny day sky ceiling and her piggy chalkboard i made 

Food with Faces


Happy Feet
Dip Bouquet

Piggy Bento

Fruit Bouquet

My 2nd Birthday Barnyard Party
This was planned for outside but i woke up on the morning of the party to pouring rain, so without hesitation i moved all of the furniture out of the lounge and moved in the hay bales!!

Haybale Sheep and Piggy

Party Bags

Grasshead party favours

Duckpond Bubbles

The welcoming Scarecrows

Willow Loves

I thought we'd move away from the medical today and share with you what Willow loves. She loves like she does everything else, intensely!!!

Willow loves animals, all animals she can sign pretty much any animal you want to throw at her, she loves her massive stuffed Lion, Pig and Monkey. Books about animals and her two dogs Grizzy and Nenina


Willow has always loved her blankets. Originally it was over her head and now just in the standard way and if no blanket is available a jumper will do :)

Willow always like playing with the coloured rice at ECIS and she really needed to work on her spoon skills and i don't know the technical term but learning that you can empty something by tipping it up.
So i made her some myself and a few people wanted it so I've sold a few bags as well.
This is the only activity that she'll stick at for more than 30 seconds, she plays with it a few times a day and now i can wash up two handed

Ice Cream
Willow would eat this 24/7 if allowed

 and last but certainly not least

Oh how Willow loves her sisters and my goodness how much do they love her. For a baby who has cried constantly, taken their mother away many time when she's in hospital, constantly been in my arms, you'd understand if they were a little resentful.  But no, my two big girls are very, very special.  They are always willing to help around the house when I'm tied down due to willow being sick, they can even make simple meals.  Not only this they have been inspired by what they've seen their sister go through. To date they have had three fundraisers for the local children's ward, the latest resulted in them breaking a world record. They raised 8254 soft toys, they children's ward took all the new ones, almost 2000 and the rest were donated to other local Charity's.
Did i say very special girls yet?
They love their little sister as much as she loves them, about 12pm Willow starts signing Car, School, Julie, Sissy, i tell you it can be a very long couple of hours till 3....Then the house fills with girly giggles and screams of delight xxxx

mud pie kitchen

Wednesday, November 24, 2010

Willow's journey so far - part 2

So we found out Willow had Turners Syndrome, here is some info on Turners

Which started a whole new round of tests, they really wanted to do more Genetic testing as the Turners syndrome only really accounted for her Short stature, puffy hands and feet, kidney issues and a few other little things, like funny nails etc. It didn't account for her Developmental Delays, , Low muscle tone, epicanthal folds (which was the first thing that made them think Chromosomal) ad various other issues.

I said I'd prefer to wait, they are looking at every part of her body anyway and it's easier once they turn 5 and their facial features are more mature and then they don't have to test so widely.

Until then Willow sees a OT, Physio, Speech Therapist, Edochronologist, Developmental Pead, Pead, GP and Early Childhood intervention.  So she's very well looked after :)

About 6 months ago she went on to a maintenance dose of Cephalexin for her UTI's which has been brilliant, she has only had a couple since and she has come forward heaps developmental since the too.

So as we stand today:
  • We have concrete diagnoses of Turners and IgA deficiency
  • We are waiting on more tests with her kidneys and to see if she has Celiacs but she's not strong enough for anesthetic atm.
  • She is walking and running, though her low muscle tone and chronic ear infections means we have a lot of spills
  • Her fine motor skills have gone from a 6 month level up to age appropriate in just 6 moths
  • The Dr's intellectual impairment theory's have been blown out of the water now that she can communicate through signs. She can still only make an Ahh noise and a noise that means juice but.... She has over 200 signs and is a chatterbox...She knows all her colors, A-D, she ca count to three and can sign whole sentences.  So she's actually a very smart little girl here's a video of her doing her animals Willow signs animals  and this is just a few random signs Willow does random signs

  • I've decided not to go with Growth Hormones even though Willow's projected height is 4'1" at this stage.  The Endo wasn't impressed and felt that as a tall woman how could i make that decision, but Willow isn't growth hormone deficient for a starter and giving her the GH would mean an injection everyday for at least 10 years for possibly 5-10 cm's.  It just doesn't seem worth it, not when she has so many other health problems, if height was the only issue maybe i'd consider it but i doubt it.
I think that's everything!!! i'm sure i've left a lot out of her story, like going into her Autistic tendency's her social issues and a few other things but there is plenty of time for that :)

I think next post i'll share some of the fun things Willow likes to do and her wicked sense of humor xxx

Willow aged 15 months old and i just realised she wore the same t-shirt

 aged 18 months

21 months with her one true love PIZZA
My big girl is now two

Monday, November 22, 2010

Willow's journey so far - part 1

WIllow was sick before she was born, they noticed she at around 32 weeks that she was very small and she was also having issues with her heart rate, i had to go into the hospital everyday for monotoring each day. I'd drop my girls off at school, go to the hospital get strapped in and stay there until it was time to pik the girls up again. Everyday there was the chance she could have to be delivered.

We managed to make it through to 36 weeks, and she was alot healthier than they thought. Weighing in at just under 2kg and with bad jaundice but she took to breast like she was starving and only needed top up feeds for 6 days and on the 7th we went home.

And then the journey began,

For the first 12 months Willow SCREAMED continously, fed every hour and would not be put down, also in that time she had 8 UTI's and many hospital trips. By 12 months old she couldn't roll, sit up make noises, eat anything and the Dr's at the royal just wouldn't listen. She also had hypercalcimia, low muscle tone and various other issues that just ouldn't be explained. Oh and also she was tiny, at this age she was the size of an average 5 month old

Then we went back to my old GP and he listened was shocked we hadn't gotten any hep as yet and got the ball rolling.

Then we started the diagnoses roller coaster.....

They started testing every bit of her, her kidney's because of the UTI's, her heart because of her blue lips and heart murmer. The Developmental Pead started various tests also.

It was during all this that we found out she had Turners Syndrome, which is a deletion of the x sex chromosone. One of the major indicators of this is short stature, Willow's projeted height at this stage is 4'1"

During this whole process i was told to prepare myself for the fact Willow had intellectal impairment.....

I'll finish this journey tomorrow

3 days old

born with attitude
When we got home there was ALOT of this