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’.

Friday, January 27, 2012

trip to the beach....

A quick post with a couple of photos...

We had a family trip to the beach last weekend, the boys go to a siblings program for siblings of children with disAbilities, and last weekend they had a surfing lesson day.

Veronika loves water, and was bursting to get into it....

For a brief moment I thought she was going to head all the way out to sea!!

But then she realized the waves weren't really to her liking....and she was happy to splash in the shallow water.....until it was time to go, and she let everyone within a 10km radius know!!!

Sunday, January 8, 2012

I love school holidays, especially the Christmas ones.

I love school holidays, especially the Christmas ones.

I love not having to rush every morning, trying to get Veronika to drink her formula and eat her breakfast, so we can get her brothers to school on time, but one of the things that I love most of all is that her therapists have a couple of weeks of over Christmas and the New Year, the bonus for me, we don’t have to rush around to Veronika’s therapy appointments, well not for 2 weeks anyway!


Tomorrow is a new week, from tomorrow my diary is looking ‘busy’ again. We have at least one appointment every day this week, and then I go to work Friday.


Its been a nice quieter couple of weeks…..lazy mornings with the family and not rushing, but tomorrow we will be back to our 'normal' routine....starting at 10am with the OT!

Tuesday, January 3, 2012

What a great year for Veronika....

another year has flown by.

At the beginning of each year since Veronika's birth, I have kind of had a list of things I wanted her to achieve by the end of the year. Most of these things carried over to the next year, as she hadn't got anywhere close to achieving them. We have a planning meeting booked for February this year with her therapists, so no doubt we will be revisiting the last 6 months goals, and setting new ones.

The 2 big things in 2011 were to be able to hold her own bottle, and obviously walking.

As you may of read earlier last year she mastered holding a bottle in March. I was so excited, as this was something we had been working on for over 2 years, and would give me an extra 2 hours in every day. Why do you say, well Veronika had 4 bottle of her prescription formula a day, and each one would take about 30 mins, adding up to 2 hours a day.

This was the day Veronika 1st held her own bottle.

Veronika still only holds it with her right hand, but she is getting better and not 'fisting' as much with her left hand. 

And obviously getting a walking frame and trying to use it a little, is a huge STEP in the right direction. After the initial issues with needing new AFO's, then new shoes to go over the AFO's, then realizing the AFO's needed to be cut smaller at the front, then needing new shoes again(smaller ones). Veronika is becoming more stable in a supported standing position all the time. Today I really realized this, when she was standing up against a soft inflatable bouncing thing she got for Christmas. 

 Therapy sessions at home, are not always enjoyable, and sometime I just have 
to not push Veronika any more. When she is tired, or hasn't had a sleep, or 
she just wants to play with her brothers.

I would hate to think how many appointments we managed to get through last year. I used to think before I had children what did I use to do with all my time. Now I wonder what I used to do with my time before I had a special needs child. As you know I wouldn't change anything about her, as Veronika is perfect just the way she is. Veronika has taught me so much in the last 3 and half years, and for that I am grateful.

Then there are the hard times, like when the Physio(at St Giles) that has been looking after Veronika since she was 8 weeks old, tells me she is going on 6 months long service leave. Part of me was happy for her, as she deserved her leave, but still she knew how to get the best out of me, to get the best out of Veronika. She had been working with us for 3 years. Then a few days before Christmas, my suspicion was confirmed, when I saw her at Veronika's Freedom Wheels assessment, that she had resigned and was finishing up the following day. We have been seeing another physio there since she went on long service, and we have formed a really good relationship, although I don't think I have cried on her yet!

The day before that her Occupation Therapist(St Giles) had called to say that she had also resigned, and wouldn't be able to see Veronika on her next scheduled appointment, as she would of finished up by then. Hopefully we will be into see a replacement therapist soon.

We have been enjoying a few days at home over Christmas/New Year. I think that is one of the added bonuses at this time of year is that all her therapists go on leave for a couple of weeks so means we get a couple of weeks off running from one therapist to the next. It all starts up again next week, but that's fine, as I strangely miss her sessions with her therapists. 

All in all 2011 was a really good year for Veronika. We had the usual trips to the emergency department, but only one week long admission to the ward. Yes we still spend a lot of time there are various clinics, but that will always be the case. 

I am looking forward to an even better 2012, with many more exciting things to come. 

BUT, I did realise yesterday, that my baby will be going to school next year(2013), and sadly even though I think she might be ready, I am almost certain that I wont be....