When your baby is 1 week old, and she has her 1st MRI and the results aren’t what you thought you would ever hear, let alone something you never want to hear……Veronika has an injury to her brain from the bleed she had before she was born, and we believe that it will affect her movement down the left side of her body, and she will most likely never walk….

I guess at that point in you make a decision, one of two possible options i guess. You either think ‘oh well, if that’s how its gonna be, why bother,’ OR ‘Yes she will walk, and we will come back in when she does and say I TOLD YOU SO’.

Tuesday, June 26, 2012

Veronika’s Entourage

This morning Veronika and her entourage(Me, her teacher from ECIS, her physio, Occupational therapist, and a OT student for good measure) visited the school Veronika is going to for kinder next year, to meet with Principal this morning….to see what needs to be done to make the school ‘Veronika friendly”…..Mummy is feeling incredibly overwhelmed, but very Blessed at the same time to have such a great team supporting Veronika’s transition to school….

…way back after Veronika’s first brain MRI at one week old, when we were told Veronika would never walk, one of my 1st thoughts was she wouldn’t be able to go to the same school as her brothers, because it’s on the side of a hill, and there are stairs EVERYWHERE….

and by EVERYWHERE I really mean EVERYWHERE…

every corner we went around, yep there is another set of stairs there too….

Veronika has been using her walking frame heaps. She is getting so much stronger, her endurance is improving every time she uses it….

but we all know walking frames weren’t designed to go up stairs(or down them for that matter), or across grass, or across pine bark….

but yes we are very Blessed that Veronika has such a great team supporting Veronika’s transition to school. There is SO much to think about, and work through…mobility is only ONE part of it…
but as I said, just over 4 years ago when Veronika had her 1st Brain MRI when she was only a week old,

Veronika's first MRI...age 1 week....they didn't need to sedate her for it, as she really didn't wake up for the 1st 2 weeks of her life...

tiny Princess in such a big machine...

to see what had happened and what the results were from the stroke she had before she was born….

and we were told she would never walk….

after my 1st gut reaction of  ‘that’s not fair, why can’t she just have down syndrome, why does she have to have brain injury as well….why are you saying she will not walk….because thats not fair….its not ok for Veronika to have a duel diagnosis…..its just not fair…..’

after my 1st gut reaction…..my mind raced to ‘but she wont be able to go to the same school as her brothers, because it’s on the side of a hill, and if she can’t walk, well how can she get around a school on the side of a hill with stairs EVERYWHERE’

a LOT has happened over the last 4 years….

but Veronika will go to the same school as her brothers….

and I am completely overwhelmed by the work that needs to be done to make this happen…

and my goal as it has been since that 1st brain MRI,

Veronika Will Walk into kinder on the 1st day of school in February next year….
my goal that I have had for the last 6 months or so, was that she would walk in without a mobility aide….

it’s still my goal, even if she will use her walking frame up to 1 step before the door, and just take 1 step thru the door way….it brings tears to my eyes just thinking about it…

I know there are a lot of people who will be just as proud of Veronika as we will be, on that day in February 2013….

There are a lot of people travelling this journey with our family….and for that I am grateful.

Dont take for granted what your children are capable of…if they can talk be grateful, if they walk be grateful, if they eat be grateful….if they can do all 3 be even more grateful….but most of all NEVER underestimate what your child is capable of….

If we had of given up those 4 years ago, and thought oh well they say Veronika won’t walk, why bother trying….well I just can’t even think about it….

lets just say never ever give up hope, anything is possible….

Sunday, June 24, 2012

Penelope Purple and Celebrating Young Carers…

What a fabulous weekend we have had…

Yesterday Veronika and I went to a book launch…. Penelope Purple by Michelle Pears.

It was a Purple Party to celebrate the book launch…a room full of Purpleness and Happiness
We had a great time there with Veronika’s best friends, singing and playing games, and of course the official reading of Penelope Purle.

Willow, Veronika and Susannah

Michelle reading Penelope Purple to all the children…thats Veronika you can see with the pig tails and curly hair ties. Michelle asked the children who loved purple and Veronika put her hand up!

 A sea of Purpleness

Then today, we celebrated Young Carers, FESTofALL, and all that our Young Carers do. My boys Jordan and Jakob(also known as Hotdogz) do so much to help with Veronika and all her therapy. They have  missed out on going to things in the past because Veronika has been unwell(either at home or in hospital).

They often entertain Veronika and help her with her therapy, they are patient with her while we are out and she wants to use her walking frame.

and today was all about them….this morning they went to Gold Class at the movies to see Brave with Tascare. They were so excited to sit in the big comfy chairs, and have a drink and popcorn delivered to them…

then we went to ZooDoo….Jordan and Jakob had a fabulous time along with their friends Julie and Sissy(Veronika’s best friends sisters). 

There was so much fun to be had.



There was lots of animals to see

Jakob feeding the tiger!

 Jakob and Sissy

 Jordan and Julie

Jakob wanted to be a white boxing kangaroo!

We want to say a big Thankyou to FESTofALL for a wonderful day, its fantastic that our children can had a day of  just being kids. Was super special to spend the day with my boys while Veronika had the day with Oma and Grandad.

Saturday, June 23, 2012

Veronika continues to amaze me...

This week Veronika has completely blown me away. Veronika had an appointment with Alison her OT. Alison fitted a hand splint to Veronika’s left hand, the hand that she could barely use for anything…..we were sitting at the table to do some work with Veronika on her fine motor skills….Alison fitted the splint(after she cut it down because Veronika’s hands are so little) and then we played with one of the toys where she had to put the little men into the block.

We were both completely amazed at what happen next…

In fact Alison had to go and get the video to record it….

Remember Veronika can barely use her left hand for anything, it is not functional by any stretch of the imagination….this is what happened

This may just be one of my Proudest Mummy Moments yet…

I still can’t believe how Veronika managed the new skill within a few seconds of wearing the hand splint. I also must apologise to everyone that I have made watch the video over the last few days…
actually I’m not going to apologise for something I am so proud of….

I have done a little without the hand splint, then with the hand splint video…Veronika can reach further and higher with the hand splint on, and her releasing the object is just so much more fluent….