Veronika Will Walk

for those of you who have been on our journey with us for  a while you would know those 3 little words that changed my life, 5 years ago today…

‘are you ok’…..I was at my routine 36 week checkup, when my Obgyn noticed that our yet to be born baby had a severe brain abnormailty….he was doing a routine ultra sound and then froze the screen, walked across the room, grabbed a huge book off the shelf, flipped through it, and then pointed to a picture in it, saying ‘that looks like that’(pointing to the screen on the ultra sound)….he then booked me an urgent ultra sound which was to happen 2 hours later, and told me to come straight back after it….he then asked me those 3 little words which was the beginning…..’are you ok?’

Head Ultrasound
the black ovals are severly abnormal swollen ventricles…

…no I wasn’t…

2 and half weeks later, after 3 long ultrasounds, multiple doctor and specialist appointments, a tour of NICU, a change of hospital where our baby was to be born, after being told ‘if she survives her birth she will be going straight to NICU at the Royal our local public hospital, thus changing from the hospital I was booked into to the Royal, and no sleep for those 2 and half weeks….we were admitted to be induced…

those words still etched firmly in my memory, just like it was yesterday….’are you ok’

I can’t believe that 5 years have passed already….sometimes they seem to have flown by, yet others they seem to be painstakingly slow….

so much has happened in the last 5 years, life has been full of ups and downs, life has been good to our family, very good in fact because Veronika survived, survived what was later revealed to be a massive bilateral stroke in utero, a stroke of magnitude that we have been told would have almost certainly killed any adult…

Veronika is a hero in my eyes as she continues to change perceptions around being differently abled…cerebral palsy-hemiplegia, Down syndrome, congenital heart defect, dyspraxia, severe hypotonia, multiple food intolerances, developmentally delayed, and epilepsy these are all ‘labels’ from doctors….not the ‘labels’ I see in Veronika funny, cheeky, determined, amazing, inspiring, strong, adorable, beautiful, stubborn, hero…

we are blessed to have the most amazing inspiring daughter any parent could wish for, Veronika not only rocks her extra chromosome, but she rocks our world for the better. Veronika’s smile  lights up any room she is in and I am delighted to be her Mum….we will continue to give Veronika every opportunity to fulfill her potential then just a little bit more…

yes ‘I AM OK’….5 years ago I wasn’t, but today I AM OK…

Easter is a time of celebration….but this year again,  I found it hard to celebrate, it saddens me that Veronika has no concept of the joy of Easter….

During last week I had been remembering the joy of my childhood, and waking up Easter Sunday ready to go on the traditional ‘easter egg hunt’ with my brothers….

Veronika had no anticipation going to bed on Saturday night, that it was Easter Sunday the following morning, and on waking and crawling up the hall she had no excitement about the easter eggs she crawled past….

(maybe its best becauase she cant eat them anyway)

I know Easter isnt all about the Eggs and chocolate….

but a part of me grieved yesterday, on Easter sunday because my daughter, who will be 5 next month, has no concept of these ‘special event days’ like Easter, Christmas and Birthdays….and i am sure that part of me was grieving yesterday, because next month Veronika will be 5 and I dont think she will have any anticipation of her Birthday coming up….and that makes me sad.

I think as a parent, for me that is one of the hardest things to emotionally deal with….a child with developmental delays, who doenst understand the reason for the celebrations…..whilst trying not to spoil the day for her brothers. I dont want the fact that this makes me sad to impact their chilhood memories, because thats not fair on them….

So what do you do to cheer yourself up?

we went for a picnic with friends at the park, and we had fish and chips from the fish shop over the road….after we could eat no more chips I asked Veronika if she would like to feed the rest to the seagulls, and she looked at me, as if to say ‘what?’, so I threw a chip and she laughed and then she threw one, she yelled and laughed the whole time, but you need to watch to the end, to see her sign ‘finished’ to the seagulls, when she had run out of chips to feed them, hmmm for some reason though i dont think seagulls understand sign language!

The week started with a coffee with Veronika’s BFF Willow’ s Mum Sally, after I had dropped my three to school, yes all three and Sally had dropped her 3 girls to school too….so this was our 1st solo coffee without Veronika and Willow, we could have talked for hours, some things never change whether the girls are with us or not!

While we were coffee-ing my phone rang, I answered it as you kind of go into the my children are at school mode and what if it’s the school…. well it wasnt school at all….it was a lovely lady from Starlight Foundation, to welcome Veronika to their wish granting program, I almost promptly burst into tears, sitting there in the cafe…and she asked if I would like to start working on what Veronika would like….I asked if they could send some ideas, because Veronika doesn’t speak apart from 4 words, and she obviously has developmental delays, and she wouldn’t understand what it means to be granted a wish…..We had a brief chat and will talk more about it soon… After our phone conversation finished and Sally and I did the Wow, Wow, WOW, wholly awesome, then my mind turned to…oh so that means Veronika falls into ‘that’ category, the serious life long different ability category, and well that has been on my mind all week….yes I have always known Veronikas diagnosis is life long, she wont magically lose her extra chromosome at some magical age, her brain injury from her bilateral strokes in utero will always be there, that wont magically disappear at a magical age either, and so on, and so on…..but at the same time, there is no way that I would change Veronika, she is absolutely perfect just the way she is, and no diagnosis defines her….but as my best friend said “You mean by ‘that’ category, you mean a gorgeous, perfect little girl that has magical powers to make people hearts melt and that someone (ie starlight) have recognised her magical talents and gorgeous personality and want to do a wonderful thing for her than yes she does fall into ‘that’ category”

So what would Veronika wish for….I think an experience possibly….and something that I have always wanted to do is dolphin therapy with Veronika, and I am sure she would love it, being the water girl she is, so maybe that will go high on the list of options…but we will put a lot of thought into what Veronika would wish for…

Tuesday one of Veronika’s therapist called, firstly to see how Veronika was settling into school(isn’t that awesome that she was thinking of Veronika and wanted to know so she called) and secondly to say that she had the MRI report I had emailed over the weekend…and that she was very relieved that it didn’t show any new findings from Veronika’s previous MRI, because she was really concerned that a tumour in her brain may have been the cause of the seizures and the primitive responses that have developed since her seizures…I said to her, that yes that thought had crossed my mind, but I had never said it out loud because that would be like admitting it was a possibility…

And wednesday it was confirmed in my heart that we had enrolled Veronika in the right school…..some of you who read Veronika Will Walk on Facebook, would have seen this…

Q. How do you know that you have made the best decision to enroll your child with all her funky complexities, and who is dependent on a mobility aide, at the mainstream school her brothers go to, which is on the side of a hill? (and we all know walking frames and wheelchairs don’t go up or down stairs)

A. 3rd week of school, and her kinder class perform the song ‘Old Macdonald’ at assembly, complete with sign language, animals taught to them by Veronika ♥ Now that’s inclusion….and yes it took all my effort not to bawl like a baby, it was beautiful…and Im sorry I can’t share video with you all….just imagine a class full of 4 year olds singing and signing their hearts away….Thankyou to her teacher, TA’s and fellow students for such a magical moment for this Mummy

April 28th 2018…this date is etched in my memory, for all the wrong reasons…

“Are You OK?” These 3 little words were to change my life completely. I was 36 and half weeks pregnant. I was having my usual check up. I had been having really painful Braxton hick’s contractions. So my obstetrician,  decided to do an ultra sound to see how far down her head was. I knew straight away something wasn’t right when he seemed to take just that little bit too long, and then when he froze the screen and got one of his text books down off the shelf, “Yes, that(pointing to the screen) looks like that(pointing to a picture in the book)”…… Our yet to be born baby girl had massively swollen ventricles in her brain.

He booked me an urgent ultra sound that I was to go a couple of hours later, and I was to go back to him for the results later that afternoon.

Those 3 little words…..”Are You OK?” I thought I was OK. As my Obstetrician was explaining to me what he had seen on the ultra sound, I thought I took it all in. I was fine I guess with the information he was giving me, up until I got up to leave, and he asked me “Are you OK?” That was the moment I burst into tears, and just cried and cried and cried. They took me into another room where one of the midwives was and called my husband Marcus to come and drive me….while I waited I was offered a cup of tea…..that’s all I remember…..

I couldn’t get in straight away for the ultra sound, I had to wait a couple of hours, just long enough to stew on it, and cry some more. The lady who did the ultra sound was lovely, it took nearly an hour. She explained a little of what she was seeing, swollen ventricles, but said I would have to wait until I went back to see the OBGYN.

“We don’t know what has caused this to happen, it’s nothing you have done, and I have only seen it 4 times in 31 years of Obstetrics. As your girl is only little, we won’t induce you as the last thing she needs is to be born early and risk having complications with her lungs being under developed, when she is already compromised to start with”. I was always a little proud of myself that I don’t have ‘big’ babies, you know it’s the one thing in life that its ok to below average at, and have smaller than average size babies. That was until that day. Our OBGYN called our Paediatrician,  who looked after our boys, Jordan and Jakob when they were babies. He somehow managed to get us an appointment at 10am the following morning. He said we needed to talk through with him what the ultra sound had shown. Before we left my Mum asked him to write down his diagnosis.

Ventriculomegaly, that’s what he wrote down on a piece of paper, so when people asked what it was, at least we had a name for it….

We went to see the Paediatrician.  We talked for an hour or so. He explained he was a general Paed and made us an appointment to see a Neonatologist at the Hospital, who worked in the NPICU. We went to see the neonatologist the following morning. We saw him a couple of times over the next couple of weeks. They still couldn’t tell us what had caused the ventriculomegaly, maybe you had an infection that passed through the placenta, and into her brain……I hadn’t been unwell, but apparently you can pass on an infection to your baby without even showing symptoms. Maybe she had my husbands platelets and they are different to mine and they have crossed the placenta and caused the bleed….maybe, maybe, maybe…..lots of test and we had a weekly specialist ultra sound…

Up until ‘that day’, we were going to have her at Calvary. Our OBGYN had said we could still have her there, but “if she survives her birth she’s just going straight to the NICU at the Royal”, I think that was the easiest decision I had to make over those long couple of weeks. There was no way I was having her anywhere else but the Royal after that comment…

May 13^th 2008. I was now almost 39 weeks pregnant. I hadn’t slept for over 2 weeks.

I was admitted to hospital to be induced the following morning…

It was a quick labour, no time for pain relief…

The room filled, I remember counting 27 Doctors, Nurses and Med Students. Of course by that time I didn’t care.

11:53am, my baby girl was here….

Our baby girl was alive, she was crying, she was so small, and most amazingly I got to hold her. Most of the Doctors and Nurses left the room after she was born. No one really said much actually. The NICU team stayed for about 10 minutes, and then left for a few minutes, waiting just outside the door. They came in every few minutes to check on her, and after about 30 minutes they said they needed to take her up to NICU. So they put her on the trolley, and wheeled her out the door. It was a very bizarre feeling. She was alive and yes I was OVERJOYED. But to have someone take your baby that was 30 minutes old…..watching her being wheeled out the door….I still can’t really explain that feeling. I just sat on the bed, wondering what to do next. ..

We took the walk up the corridor from maternity to NICU. A walk that I would do many times over the following weeks. We pressed the buzzer on the wall, as we had been shown, and we “let” in. We were shown to where she was, but I couldn’t really even see her. I think there were 5 or 6 Doctors and Nurses all around her. One of them explained they were just doing the new born examination….

It wasnt long after that, we were given Veronika’s Trisomy 21 diagnosis(Down Syndrome)…then later that day we were told during a routine heart exam that she had a small hole in her hear, nothing to worry about….the following day we were told she had a large hole and a faulty valve, that would require open heart surgery at a later date…

A week later Veronika had her 1st brain MRI, to see what happened in utero…

grade 3 and 4 bilateral intra ventricular haemorrhages….

and we don’t know how she survived….it would of killed any adult…

and she will never walk….she has an injury to the area af her brain, that we believe will affect her movement down the left side of her body….

I cried, and cried, and cried

and then cried some more…

Believe in Miracles…

how can Veronika go to the same school as her brothers….its on the side of a hill….this is my goal….for her to walk into kinder on her 1st day of school…

February 6th 2013….

this date is etched in my memory forever….for a very good reason

4 years and 8 months of therapy, determination, tears, stubbornness, love, dedication, fighting, advocating for therapy, love, and joy later….

…being diagnosed over the 4 plus years with Trisomy 21, severe hypotonia, a congenital heart defect, cerebral palsy, left side hemiplegia, multiple food and environmental intollerances, dyspraxia, and epilepsy

Veronika walked into school, with the support of her walking frame…

and for that moment…

in that class room…

i was the proudest Mumma there….

Veronika started her early intervention therapy when she was a week old….

and today my dream became reality….

….so whats next…

to be honest I have never really thought too much past this day….

but for tomorrow, Veronika has an MRI booked to see if she has suffered another stroke or strokes during her recent seizures…and if all the stars allign she will also have a full dental exam and any xrays needed while she is under the general anaesetic, to see if the primitive reflexes of her smashing her teeth together has damaged her teeth….something new since her seizures….

and the following day she will trail a wheel chair….

but for next week and the week after that….

and the week after that….in between the continuing therapy….

I think it is time for Veronika to enjoy her childhood, to enjoy her start to school, to form friendships, and just be a kid at school….

As you may know, early last month Veronika had her 1st seizure, or at least what we thought at the time was her 1st seizure….it turns out there is a fair chance that it probably wasnt her 1st one….following that 15 minute seizure on 3rd December….Veronika’s skills regressed, regressed a lot….her left foot was completely lost while trying to walk, and Veronika couldnt steer her walking frame….

and 2 weeks later Veronika still hadn’t recovered, and had another big seizure during the night…and her skills regressed even more….over a years worth of hard work and therapy gone….this was her walking following her 2nd seizure

To say I was shattered was a massive understatement…

we had worked so hard through 2012 to get Veronika ‘school ready’

and now this, she couldn’t even steer her walking frame any more,

she had lost her communication, gone from over 120 signs in Auslan to about 10 and even then they were confused and ‘made up versions’

shattering, devastating, upsetting….so much therapy undone

BUT

Veronika is stubborn….and she takes EVERYTHING in her stride, with the biggest smile imaginable

For the last 3 weeks Veronika has been along to Neuro-Developmental Therapy as a case study for a course that was being run…

http://www.abndta.asn.au/view/about-bobath/what-is-bobath/

perfect timing really, as I was hoping, fingers crossed, hoping, that just somehow an intensive 3 weeks of therapy might, just might help Veronika regain some of those lost skills, ready to start school on February 6th…

what I was not expecting at all, was amazing outcomes…Veronika had 2 therapists working with her, B and K, a physio and an occupational therapist, they worked on the skills that they had been learning through the course, as usual Veronika took everything in her stride, and laughed, smiled and played the whole way through each session, yes there was times Veronika was very demanding, and wanted to do what she wanted to do, but these 2 amazing therapists took it in their stride, and worked around that, while still working on their goals for each session…

Yesterday Thankyou didn’t seem a big enough word as we were leaving….the last session had ended, we said goodbye, and a quick Thankyou for all they had done for Veronika, and I left quickly, as I knew I was about to cry because they had achieved so much….and I had just seen one of the most AMAZING things Veronika had ever done, something that might just make my dream of the last 4 years 8 months a reality…

for Veronika to walk into kinder….

you simply must see how Veronika took K’s hand, and in K’s words…I was so proud of her when she took those steps. It took a lot of courage on her part to trust her body and me that she was safe. Veronika continues to find her feet, and this short, brief clip needs no explanation…