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

Off to Melbourne to see Veronika's Paed Cardiac Surgeon

The last almost 3 years have gone so fast, but in particular the last 6 months. For those of you that have joined on our journey hear is a quick run down of Veronika's Cardiac Journey.....

 Veronika on the 14th May, 2008, her Birth Day

  • 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.

 Waiting for blood tests as part of Veronika's pre admission last November

 Veronika at the HeartKids Christmas Party last year.

The last 6 months has flown by, and we are going to Melbourne tomorrow for Veronika's appointment on Monday. I am confident it will be all good news, as Veronika has been really well lately, apart from the occasional blue hands and feet. And she is finally growing....

Oh and don't forget to buy you tickets for the Veronika Will Walk Gala Events.....you can even buy them online at www.veronikawillwalk.org and we will post them to you....

Saturday, April 23, 2011

Look out for the Sunday Tasmanian Tomorrow

On Monday we saw Veronika's dietitian. She has recommended that for 2 months we eliminate wheat, gluten, eggs, dairy, soy and rice milk....in the hope that Veronika will start to eat. So far for the rest of the week, it hasn't really had any effect on increasing her food intake, but I will continue to persevere and hopefully she will soon start to eat. Then in a couple of months the dietitian has recommended that we redo the allergy tests to see if anything shows up.

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

My Beautiful Friend.....

Yesterday we celebrated the life of one of Veronika's greatest supporters....Karina passed away suddenly and unexpectedly last week. I know that one day in the future when Veronika Walks, Karina will be looking down clapping and cheering.

I had the privilege of sharing at her funeral....

In life there are people who you have been friends with for as long as you can remember, and then there are other people who you have known for a shorter time, but you feel like you have know them forever. For me Karina was one of those people.

I met Karina just over 3 years ago, while we were waiting for school to finish, we just started talking. Karina was pregnant with Charlie and I was with Veronika. I invited Karina to come to a mums group that I go to, for mothers of pre schoolers(MOPS). From there we became close friends, especially over the last year, after Mark and Karina moved to Brighton.

For the last year Karina was my hospital buddy. Amber had a bad winter, and often needed a trip to the emergency department. My Veronika was the same. Whenever Amber needed to go to hospital I would drive Karina and Amber in, and when Veronika needed to go, Karina would drive us in. Our girls are frequent flyers at the emergency department. Each trip would see us spend the usual 8-10 hours while Amber or Veronika were under observation. I guess that’s the really special times I shared with Karina, 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 her family, faith, friends and life. Karina was never afraid to say what she was feeling. We would often joke the following day, about what the other people around us must of thought of our conversations. Our last trip was 2 days before Mark and Karina moved into their new home, just over a month ago. Karina thought she had broken her foot, so I took her to the hospital. At 2am when we were on our way home, we decided that there must be a better way to catch up without our kids.

Karina was so supportive of me and our family on our journey with Veronika. Karina was always there to listen to my concerns around Veronika's disabilities. One of the most special things Karina was currently doing was learning the signs Veronika uses, so she could communicate with her.

Last week is one I will never forget. Monday I actually had half a day at home and Karina came over. Mark was unwell, and was at home resting and Charlie and Amber were asleep, so she called and came over for a couple of hours. Veronika was also asleep, so we actually got to have 2 hot coffees each over a lovely chat. We talked about many, many things as we weren't distracted by our children.......this time is even more precious to me now. Karina was really loving life, she was settling into her new home with Mark, Rohan, Charlie and Amber. It was to be the last time I talked to her, just 2 days later Mark told me she had passed away during the night.

Mark I want you to know that I will help you to never let your Children forget their mother. As they grow up I will tell them how she loved them to the moon and back, how passionate she was about life, her family, her faith and her friends. How she spoke up for what she believed, even if no one else in the room agreed. What an amazing quality.

For now I miss my beautiful friend, but hold dear the memories of our friendship.
Rest In Peace, Karina. I love you...

Sunday, April 17, 2011

What a week....

This past week is one I will never forget. Monday I actually had half a day at home and one of my best friends Karina came over. Her hubby was unwell, and was at home resting and her 2 youngest children were asleep(they are 1 and 2), so she called and came over for a couple of hours. Veronika was also asleep, so we actually got to have 2 hot coffees each over a lovely chat. We talked about many, many things as we weren't distracted by our children.......later that afternoon I took my boys to the Doctors for their Flu vaccinations, and later on I managed to hurt my back lifting Veronika. I thought "I will be right in the morning after a good night sleep"......well the next morning I wondered how I was going to get out of bed! So my Hubby took the day off work and took me to the Doctor, who said rest up and don't lift Veronika for a few days! Marcus took Tuesday and Wednesday days off work to drive, and carry Veronika around to her appointments for me.

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 Will Walk Gala New Venue

I just have to give you all a quick update about Veronika Will Walk Gala Events for May 28th. We have had a change of venue, we will now be at Youth ARC at 44 Collins Street, Hobart. Youth ARC are more than happy to donate their building for us to use for the Gala. Thank you to Youth Arc. Very soon Hobart and Surrounding suburbs will be plastered with Posters promoting VWW!

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

Brain Injury Rehab Specialist, Formula and Veronikas loves her new Wheels

Today Veronika had her appointment with her Brain Injury Rehabilitation Specialist. He was really happy with Veronika's progress over the last 6 months. Last time we saw him, he wanted Veronika to be weight baring at a coffee table by the next time he saw her. I remember as we left last time the physio said "well then we have a lot of work to do", my reply "and I have to buy a coffee table". Her Dr was   especially happy that she is now pulling to stand, climbing up onto the couch, and the most impressive and a kind of a cruise around the pool. About 3 weeks ago, when we were at hydrotherapy Veronika had a toy roll along the side of the pool. She looked at it, then looked back where it rolled from, then looked at it again, looked back in front of her and then she slid her hand along the rail. her right leg thru the water and then kind of dragged her left leg and arm, while I was supporting her around her hips/pelvis. SO its kind of a cruise around the pool now, Veronika has made the connection that if she wants to get somewhere, she needs to use her legs! She is still a very long way off being able to do that herself, her balance standing still, needs a lot of work, but we WILL get there, and one day she WILL WALK. The Dr today wants her to have a hip xray, which is a routine thing, so will have to book that....all in all, the Dr was happy, so I am Happy. We talked about how its just been the last 6 months that the benefits of all the hard work are really starting to pay off, Veronika's progress will always be slow, but now that she has achieved a couple of really big milestones like standing and climbing I can see the results of the endless physio and OT sessions.

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

Referals, Script, Injection and New Wheels

Wednesday Veronika and I went to see our GP. We needed a couple of referrals for some of her upcoming appointments. The Brain Injury Rehab Specialist we see next week, and the Paed Cardiac surgeon in Melbourne for May 2nd. Then Veronika had her annual flu vaccination, and then asked about a new script for Veronika's Formula. Veronika is intolerant to cows milk protein, soy protein and cant tolerate rice milk. She refuses to drink anything but her formula, and eats hardly anything. She is also intolerant to wheat, eggs, dairy and kiwi fruit too. So her formula is her main source of nutrition. Last time we were able to get a script without much fuss, well now its proving difficult. My GP cant get an authority to write her script as she is over 2 and not allergic to soy and cows milk protein. Apparently intolerant doesn't count. So it looks like we are going to be up for around $200 a month for her formula, the GP said unless we can get a gastoenterologist to sign off on it.....but we don't have a paediatric gastoenterologist in Tasmania! So I came home and called the Hospital to get a message to Veronika's Paediatrician, to try to get her to do a script, but she wasn't in the clinic to yesterday afternoon....and I had to work all day today and couldn't get to the phone to see how she went. Have decided I am not going to stress about it and deal with it on Monday.....

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.