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, January 25, 2011
Stop yelling at me!
A couple of Sundays ago we went to have afternoon tea with a friend who we met last year when Veronika was in hospital, Sallyanne and her gorgeous daughter Willow, who shared a room with Veronika, and Willows 2 older sisters, Jules and Sissy. Its amazing how you have only known someone for such a short amount of time, but is feels like you have been friends forever. Sally made Veronika some biscuits and blueberry pie. As Veronika is intolerant to dairy, eggs, wheat, soy and rice milk, this would be a challenge for most people. But the amazing Sally outdid herself. Veronika ate a big slice of blueberry pie, followed by a biscuit. Sally kindly gave us some pie and bikkies to take home for later. Well Veronika loved her biscuits, she had one the following afternoon, and was signing 'more' with such intensity that it just came out "stop yelling at me", I said before I realized what I had said. My husband agreed that, yes Veronika was yelling at me thru "sign language". I then immediately remembered Sally telling me she had the same kind of moment with Willow, only she was at the shops, and everyone kind of looked at the lady telling her daughter to stop yelling at her, when to them Willow hadn't said anything at all. The joys of a non verbal child, but isn't it amazing how they still can get their point across.
The biggest highlight of the last 2 weeks is that our Princess, has learnt to pull herself to standing, unassisted. So exciting.....its been a long time coming, one that very early on in Veronika's life I thought would never happen. We saw our Physiotherapist yesterday, and she was rather excited. She has been on the journey with Veronika since the early days, and is very excited to see how well Veronika is progressing. She gave us a few more hot tips, to develop her core strength, which will hopefully help her to become stronger. We are also working on an adaption for the pedals on Veronika's little push trike, so we can go for 'rides' and keep her feet on the pedals so she learns that's how you get the trike to move. The other big thing that Veronika's physio is helping us with is a bigger pram for Veronika. She has grown so much in the last 3 months, and is getting too tall for her pram. We have talked a lot over the last couple months about if we should go for a wheel chair over the pram, and recently came to the decision that at this time a pram is more suitable. Veronika is still little for a 2 and 1/2year old, and the benefits bigger pram V's wheelchair have swung the way of a pram.
Veronika has had both feet plastered to make foot orthotics, one for her 'good' foot, to help stabilize it. Plus a new one for her foot affected by her cerebral palsy, to wear in the hydrotherapy pool. Veronika has been turning her foot out when standing in the pool, and we thougth it would be good to have one that doesn't matter if it gets wet. They should be ready to pick up next week, so between now and then, my mission is to find some shoes that will fit her AFO in that she wears on her left foot, that are light enough because of her low muscle tone. Veronika hasn't really worn shoes before as she has such low muscle tone, that they are too heavy for her little feet. So that will be an interesting challenge.....
Our family also managed a weekend away over the weekend just gone. We haven't had a weekend away since we had Veronika, so it was lovely. We were invited by another friend that I met thru Ronald McDonald house MyTime group(support group for children with disabilities). There were 3 families that went up to Orford, and we stayed at a place on the beach. Delightful. The highlight of the weekend was when the 3 Mummies went out on the biscuit on the back of the boat. Well we were quite well balanced until 1 of the kids said to stop the boat, and of course all 3 of us fell in. I haven't laughed so much in such a long time. Well at least we could laugh at ourselves, along with everyone laughing at us!