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’.

Monday, August 29, 2011

My 1st Time at Public Speaking...

I survived.....my 1st attempt at public speaking about my journey with Veronika, and specifically my MumSense(intuition). Well at least I think I survived......

I presented at the Mother's of Preschoolers(MOPS) leaders conference on Friday night. This is where the theme for MOPS 2012 was revealed. MumSense
Mum Intuition + Common Sense = MumSense
This has been broken into 3 parts, and I was sharing about Discovering My MumSense. It was challenging, and yes I was emotional at the beginning, as I was about to share some personal "stuff". But then i remembered to Breath, and off I went.

Throughout my last pregnancy with my daughter, I always had a feeling somethings wasn’t “quite right”. I wasn’t really sure what, I just felt as if something wasn’t quite right.

April 28th 2008, the day my whole world changed.......

It wasn't long after this I looked around at the people listening to my journey, and wow, there were some tears. Yes my Mum always taught me that it isn't nice to make people cry, but in this instance it was different, I guess I knew at that point, what I was sharing was having an impact. 

At the same time I was also overcoming another fear....my fear of leaving Veronika over night and going up the other end of the state. I did of course have my back up safe plan, my just in case Veronika was to become sick and I needed to get home fast. I declined the offer to get a ride up there with someone else, just in case I needed to get home. I didn't need to dash home. So YEAH for me! And the bonus of this all was that I got to drive from one end of the state to the other all by myself and  I had on the music I wanted to listen too!

Yesterday I overcame another fear. The fear of taking Veronika to a public pool, that isn't heated as much as she is used to. We haven't taken her to a public pool for a while, as she tends to go blue quite fast. So after talking with one of the pool staff at the rehab pool we go to, I decided that Veronika would be wearing a wetsuit in the water. So when we got there, I explained to them that Veronika has multiple disabilities including a congenital heart defect and that she would be wearing a wetsuit in the water, to help her not go blue as fast. The lady looked at me, and she said that was fine, and just make sure I let the life guard know. Well that was a lot easier than i thought!

For something completely different, Veronika has learnt to sign 'good'. When we went to the rehab pool last week that we go to every week, Kathy who works there, asked her "how are you today girlfriend"(the question she asks her every time we go), and Veronika signed 'good' without any prompting. She had never signed it before, and its so cute how she does. It's just the basic 'thumb up, with closed fist', but the smile on her face while she signs she is good is just priceless.

Wednesday, August 24, 2011

Planning for the next 6 months......

What a buzz.....today at ECIS on of Veronika's friends who has just started WALKING.....came in the door and stood next to me as I was pushing Veronika on the swing. She had her arms outstretched after a hug. It was one of those moments, life suddenly pauses for a few moments, to take it in....this adorable little girl, had walked all the way from the car, and was so excited to be at school with her friends. It wasn't just that she WALKED, it was more than that, the joy on her face, still brings a tear to my eye just thinking about the moment. She gave me the biggest hug, and for a brief moment the world stopped, around me.....maybe that's because deep down I cant wait for that day that Veronika will be strong enough to walk....she has already mastered the art of getting a hug.

My week is only going to get more exciting from here. Friday I am off to speak at a conference on my journey with Veronika. About finding my MumSense. I am really excited to be able to share some of my journey over the last 3 and a bit years, but at the same time, a little nervous. It's not the speaking in front of a room full of people, its more about sharing some pretty personal "stuff". I will have to let you know how i get on!

Veronika is recovering from her latest UTI. She bounces back so fast which is amazing really. Tomorrow we have a planning meeting with her Physio, Occupational Therapist, hopefully her teacher from ECIS is she can make it in between appointments, and the social worker. We will be looking at the goals we set at the last meeting(which was maybe late last year). I am really excited about this planning meeting as Veronika has reached some of those goals, the 2 biggest holding her own bottle and crawling. It will be interesting what her therapists have their minds for Veronika's goals for the next 6 months too.

Stay tuned for the goals.....

Wednesday, August 17, 2011

Catching up on what Veronika has been up to...

Well yes I know I have been a little less frequent with my blog lately. 
So here goes more of a visual blog....

These were taken in July. We have a fence across the kitchen so 
Veronika cant get under my feet while I am cooking.
I just love these 2 photos of Veronika

We went to the Playschool Concert in July, thanks to our MyTime Group.
Veronika loved the show, but she did however find it hard to see at times, as all the children were standing and because Veronika can't really stand up, she tired really fast. She loved the Music, and at the end she went over and sat on the edge of the stage and was signing 'more'.

10th August 2011
This was taken at ECIS, or Veronika's School as we call it.
 Veronika was standing as best she could with the table supporting her.

 and when that got too much, she just climbed up onto the table to play!

 Cruising in the little purple car. Today was the 1st day Veronika managed to go forward in the car. She has been speeding backwards for a while, but was so excited when she figured out she could go forwards.
 Veronika usually heads straight for the stairs as soon as we get to ECIS. I think she would over them all session long if I let her.....
A few months ago, Veronika figured out how to crawl thru the tunnel, 
but this day she decided just to hang out instead.

Veronika got her iPad holder also on the 10th August 2011. Tascare Society for Children, 
introduced us to TADTAS, who make the Freedom Wheels bikes, to see if they would be able to modify Veronika's pram to hold her iPad. This is going to save me holding it for her when we are waiting for her Doctors appointments. As you can see Veronika was very excited!

And for another proud Mummy moment....This is my oldest son Jordan.
He recently went in the Computer Skills Competition, and he got a Distinction and
was in the top 2% of participants in Grade 3 for Tasmania.

Monday, August 8, 2011

Girly Girl!!!

Last week I finally got time to actually do something for myself.....I had my hair done! Veronika was booked in for a trim too. Off to the hairdressers we went.....Veronika was paying close attention as Jamie was putting the foils in my hair. Then when it came time for her hair cut, Jamie gave Veronika a piece of foil to hold, she immediately started putting it on her head. Jamie asked her if she wanted it in her hair and she nodded. He told her as soon as he finished cutting her hair, he would put it into her hair. Veronika was so excited when Jamie put the piece of foil in her hair, and smiled the biggest smile, and clapped.

Another proud note, was driving along today. Veronika was in the back.....listening to her CD. When we got up to Glump went the little green frog song, and she started signing Frog....so cute.

Wednesday, August 3, 2011

Australian Paediatrician Exams!

Well it's Thursday already. This morning I am treating myself and having the morning at home....playgroup can wait to next week. Before I am off to an afternoon appointment and then swimming lessons for my boys Jordan who turned 9 last week, and Jakob 6.

The weeks are passing by so fast. Veronika is keeping me busy as ever. Last week she was a long case study for the Australian Paediatrician Exams. We have been asked to participate for 3 years, and is something that I really like to do. I kind of feel as if it's a way that Veronika and I can give back to the hospital that we have spent so much time in. We have also been asked many times too if Veronika can be used in a practice exam, to which the answer is yes. I sometimes wonder if Veronika's file has a red mark on it or something as quite often when we are at the hospital for an outpatients appointment we often seem to have people come ask if they can do a practice exam on her. When Veronika was there in May for her MRI and hearing test we had 2 Doctors come find us!

Last week while we were waiting to get started Veronika kept crawling over and sitting in the door way, and said the usual 'ayyy' to everyone that walked past, and when they looked at her she would smile and blow them a kiss. When her Paediatrician that we see for Veronika walked past, she stopped and said, 'Veronikas in fine form today, stopping everyone on their way past.' For those of you that know Veronika I know you will be picturing exactly what she was doing!

Last week we also registered for the Better Start Program. I was really surprised when the package turned up in the post Monday morning to say Veronika was now registered. Didn't think it would be that quick or that easy! We have a planning meeting booked later this month with Veronika's Physio, Occupational Therapist, Social Worker and hopefully her teacher from Early Learning. I am hoping that way we can get some plan together as to how best to allocate this funding to maximise the benefit for Veronika

I am off now to do some messy play with my Veronika....