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’.

Sunday, November 20, 2011

procrastination.....

I finally got around to it......or maybe I was finally in the right mindset to do something that I have been putting off since Veronika was 11 months old.

The later was the correct answer.

As you know Veronika was diagnosed with Cerebral Palsy (left side hemiplegia) at 11 months. When she was diagnosed with CP....that was the hardest diagnosis for me that she had been given. I knew that she had the stroke before she was born, and that she had brain injury from that. And yes we had been told she would most likely never walk. But I guess I had never really made the connection that she would be given another diagnosis. Up to the time when we went to see the Brain Injury Specialist, I had be over analysing everything Veronika was doing with the left side of her body, along with her physios. It was at around 9-10 months of age that there was becoming a significant 'tone' difference, as well as a very different amount of use in particular between Veronika's left and right arms. So we were referred onto the Brain Injury Specialist.

I guess that day I had no idea that I was going to get yet 'another diagnosis' for Veronika. I thought I was just going to have a chat with yet another Doctor about Veronika and how she was developing, in particular the left side of her body......maybe DENIAL is a more accurate description of how I was around that time. I remember that day like it was yesterday. I remember holding it all together while I was seeing the Specialist with Veronika, I remember that exact moment he said she has Cerebral Palsy.....I remember him giving me the forms to register her on the Cerebral Palsy register.

I also remember holding it together enough until I got to the car, strapped Veronika into her seat, and then sat in my seat and just cried. I called my husband to tell him, and also gave him the "but its not fair, how come she has to have Down Syndrome and Cerebral Palsy?"

I didn't know what to do next....so I went to my Mothers of PreSchoolers group, and held Veronika close while I cried some more, while I talked with our mentor and a couple of the other Mums I was close with.

So what have I finally got around to.....I finally filled in the forms for the CP register, and hand delivered them. They have been on my kitchen bench for over 2 and half years, they have been into hospital on a couple of trips, thinking that I would 'make' the time to fill them out while I was sitting, filling in my days while Veronika was unwell. You may be wondering why its taken me so long. Its like admitting that yes Veronika has CP. Once she is on the register its official. Don't get me wrong, I know she has CP, after all I'm not stupid(or not that stupid anyway). But its kind of like, yep its official, Veronika's on the CP register, so she really has CP. Its a feeling that's really hard to explain, maybe that its almost like I'm not in control or something.

But life goes on, and I am proud that I have finally filled them out and delivered them.

Tomorrow is a new day, all be it with more appointments for the week to come.





 A coulpe of Pics from the Special Childrens Christmas Party. 
Veronika and Jakob had their faces painted....


Thursday, November 10, 2011

I have learnt it good to say I'm Proud.....and PROUD I am

video


Veronika got a walking frame 3 weeks ago. This was the day she got it....those of you who know the journey we have been on.....Veronika's journey to mobility.....after being told after her 1st MRI when she was 1 week old, she would not walk....well there are no words to describe how over joyed I am, how proud.....I think the video speaks for itself. I watched it over and over and over, not believing that Veronika had taken some steps in a walking frame. PROUD.

I then taught her to sign 'clever', as when we showed people her video, they would always say how clever she is. Last week we went back to see the physio that gave us the walking frame. She said to Veronika, 'are you going to show me how you can use your frame?' So I put Veronika into it, she took 3 steps, and started to sign 'clever', when her Physio said Veronika put your hand back on, you need to hold on with both hands......I said to her, 'she's telling you she's clever'. Her heart just melted, and agreed that yes Veronika is clever, but she still needs to hold on with both hands.


I managed to get thru 8 doctors/allied health appointments for Veronika last week, and 2 for me. I had a steroid injection in my shoulder on Friday, as its been quite sore for a few months, and Veronika's physio told me I should get it looked at. Well she was right(of course) and yes I did need to look after it!

So i figured if I could get thru so many appointments last week, then I could have a quieter week this week, and maybe even a bit of time at home, so I don't have to carry Veronika around every where. And yes I have managed to get a bit of time at home with my Princess. Just as well, because I had a look at my diary today for next week, as one of Veronika's physios wanted to change her appointment forward by half an hour for next Tuesday. Ummmm.......somehow I have managed to book 9 appointments for Veronika next week(including her school, but still have to find time to get her to St Giles hydrotherapy), so looks like next week is going to be full on too!

Oh well, life is to short not to be busy.....

I just remembered too that I owed you a photo for Down Syndrome Tasmania's Buddy Walk. Despite the fact that it drizzled/rained all day, we had a great turnout, and a great time at the Buddy Walk.

 Veronika and Nanna pushing her


Walking thru St David's Park

.....and the end of the day, was a long day and right about this time Veronika was over it!