- Veronika was diagnosed with Down Syndrome at birth. 1 in 4 babies born with Down Syndrome have a Congenital Heart Defect, so Veronika had her heart checked.
- Veronika was diagnosed with a Congenital Heart Defect a couple of hours after she was born. We were told it wasn't really anything that we needed to worry about.
- The next day she had a echo cardiogram, which showed she had a 8mm hole in her heart called an ASD. We were told that she would need open heart surgery in the near future, depending on how well or unwell, she was. I told the Doctor in NICU that he said the day before that it was nothing to worry about, and he did apologise!
- We were refered to the Cardiac clinic in Hobart, where Cardiologists from Royal Children's Hospital Melbourne come to see our precious little ones
- We were seen every 3 months when they came to Hobart
- There are 2 Cardiologist that come to Hobart, 1 thought Veronika should have her heart repaired, and the other wanted to 'wait and see'
- Last winter Veronika suffered recuring bouts of Pneumonia, around every 4-5 weeks. So it was decided that we should take Veronika to Melbourne to meet the Paed Cardiac Catheter Surgeon for him to decide what to do
- In July we saw him. He agreed Veronika needed the repair done, he said there was no medical evidence to support that she had pneumonia so often because of her ASD, but thought it was best to repair it. He said the wall of her heart was like Swiss cheese, and had many holes over a 18mm space, the largest hole being 13mm. He said there was good news and bad news, the bad the waiting list was 2 years, and the good, he would put her at the top and operate in around 3 months.
- We went home very happy with his decision.
- Veronika became really sick a couple days after returning home, and this was the 1st time I have actually thought we would loose her
- Veronika surgery was scheduled and re scheduled because of her pneumonia, they wont operate for 8 weeks after respiratory infection. We went early November and had 8 hours of pre admission, we were told to come around 11am the following day as she was on the afternoon list. Then a hour later we had a call from one of the surgeons. The head surgeon was reviewing Veronika's cardioecho and the largest hole now appeared to be around 5 mm, and the whole defect was about 9mm(i think from memory). He said he wanted to see us in the morning.
- He told us he had never seen a hole as big as Veronika had only a few months before, close up so much in such a short amount of time. He didn't want to operate, unless we insisted that he do(of course we didn't want him to, the side effects/risks of heart surgery are enough to say no even when its needed!) and to come back in 6 months for a review.
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’.
Saturday, April 30, 2011
Saturday, April 23, 2011
Then we went to see Veronika's Physio. While we were there I got a message to call Hannah from the Mercury, as she had come across Veronika's face book page. Hannah interviewed our family last November before we went over to Melbourne for Veronika's heart surgery. Hannah remembered Veronika, and called to ask if she could do a story on Veronika and the Veronika Will Walk Gala events, for the major fundraiser for the hydrotherapy spa. We arranged for Hannah to come to St Giles Pool where we go for Veronika's hydrotherapy, so she could talk to us and also take some photos of her in the water. The story will be in the Sunday Tasmanian tomorrow(Easter Sunday).
The last couple of days I have been trying to find dairy free chocolate Easter eggs, that also are soy free......I haven't managed to find any but today when I went to Eumarrah, the lady was really help full with other things and gave Veronika some cranberries to try and she loved them, she was signing "more" so I brought some for her, maybe that will do as a Easter egg substitute.....will have to let you know about how that goes....
Friday, April 22, 2011
I had the privilege of sharing at her funeral....
Sunday, April 17, 2011
Then Wednesday afternoon when we got in there was a message on the machine to call Mark(Karina's Hubby)......so I called her mobile....and was told the news that Karina had passed away during the night.....shocked, stunned, speechless, devastated......there are no words to describe that moment.....one of my closest and best friends gone. Karina loved life, her family and her friends. She was so supportive of my journey with Veronika, she was learning the signs Veronika uses, so she could communicate with her. Karina was my hospital buddy. Whenever Veronika was sick and we had to do the dash to hospital(was every 4 weeks or so last winter), Karina would always drive me, because of Veronika's heart we had to have 2 adults in the car, and quite often it was at night when our boys were asleep. And when Karina needed to do the dash with Amber, her youngest who had a lot of respiratory infections too last winter, I would drive her. We spent many hours over the last year 18 months in the emergency department. We always had something to talk about, we talked about our hopes and dreams for the future, as well as our fears. Karina was passionate about helping Veronika Walk and I know that when Veronika does, Karina will be smiling down on her, clapping and cheering.....
We finished the week on a positive note. The Easter raffle that Liz organised was drawn on Friday by Veronika's Nanna, my Mum, Anne. I cant remember the winners name, but will let you know when Liz returns from her trip away.....but there is 1 happy person with a basket full of chocolate. Thanks Liz for supporting Veronika Will Walk.
And for Veronika's big achievement of the week, "MUM". Veronika has mastered the best word in the world, Mum. She is using it with purpose to get my attention. One day this week she was watching her Signing DVD and when it finished, I heard, Mum, and when I looked over at her, she was pointing at the TV and signing "more". How could I not put another signing DVD on after that, so cute.....
Early learning this week was all about green sheep, the book of the day. The children decorated Green Sheep
And also played with Green gooey slimy stuff....................
Thursday, April 7, 2011
Veronika has also been given another gift recently, veronikawillwalk.org
Peter who has donated his time to do the posters and tickets for Veronika's Gala created Veronika's Own Web Page. And I just LOVE IT. Peter has set up the web page so you can buy your ticket to her gala events from it, and for those of you who cant make it to her gala, but would like to donate, Peter has also included a donate button on Veronika's Web Page too.
Today Veronika had her hip xray. It was great to finally meet Liz. Liz works at MIA and she is carrying around the biggest basket of Easter eggs you will most likely ever see, and selling raffle tickets to help Veronika Walk. Liz is doing an amazing job selling the tickets and some lucky lucky person is going to be super happy when the raffle is drawn Friday 15th April. Veronika was very still for her xray, and hopefully it wont be too long before we hear from the brain injury specialist, saying everything is fine. The power of positive thinking.....ohh just a thought I will have to get a photo off Liz of the raffle so you can all see....
Tuesday, April 5, 2011
Another win today, Veronika's script for her formula came in the post from the Paed, and she managed to get in on authority. SO its not going to cost a fortune, just the usual amount. So happy about that. So glad I didn't stress about it all weekend! I am still thinking that I might ask to see a Paed Gastroenterologist anyway, next time we see the Paed, to try to figure out why Veronika wont drink anything other than her formula, and why she isn't interested in eating ANYTHING. Worth talking to the Paed about anyway.
Veronika has been using the new wheels we borrowed from St Giles. She loves them, and we have been getting lots of positive comments about how good she looks in them. But then My Baby Girl looks good in anything!
And had a talk with Principal of St Cuthberts school today(school Veronika's brothers Jordan and Jakob go to), so watch this space for more details to follow of a VWW fundraiser......
Friday, April 1, 2011
Yesterday Veronika and I went to see the Physio, and we have decided to get her to do a submission for the pram we looked at last week. This will more that likely take a couple of months to get done and approved, so in the mean time we have borrowed a convaid cruiser from the short term loans at St Giles. Veronika loves her new wheels, and Jordan and Jakob wanted to push her around Shoreline Shopping Centre.