Veronika Will Walk

Never giving up

Ten things people with Down syndrome would like you to know

Ice Cream Dress!

28th January 2016

 

I first came across Living Dead Clothing when Madeline Stuart did some modelling for them last year. I brought myself a dress last year after Veronika’s surgery and every time I wear it I get comments on how awesome it is(I should post a pic in the comments)

Veronika was given some money for Christmas. Last week I was looking at the dresses and noticed they have some girls dresses. Veronika was sitting next to me and as soon as she saw this one she said ‘that one’ and then signed ‘ice cream’. I asked her if that’s what she wanted to spend her money on, and I got a huge ‘yeah’

I have one very excited girl today after the post arrived!

Dancing away with the fabric swishing around her 😊

‪#‎veronikawillwalk‬ ‪#‎livingdeadclothing‬ ‪#‎cerebralpalsy‬ ‪#‎trisomy21‬‪#‎newdress‬ ‪#‎icecream‬ ‪#‎happygirl‬ ‪#‎madelinestuart‬

Veronika Will Walk, our Ups and Downs with Cerebral Palsy's photo.

Siblings…

26th January 2016

Siblings…..

Having a sister that has high care needs means that a lot of my time is taken helping Veronika….today I spent over 2 hours(over the day) sitting, helping Veronika drink from her cut out cup to try and get more fluid into her….this is along with the usual therapy we do each day, plus all the ‘usual things’ with being a mum.

For me it’s important to grab some time with Veronika’s brothers when I can….so tonight after dinner Jakob and I went out for a bike ride. I’m working on getting better at making time to do things with the boys, either individually or together….and this is one of my big personal goals for this year. Last year was incredibly tough with Veronika’s surgery and rehab, which meant Veronika and I were interstate for over 2 months, and when we were home it was incredibly difficult to get out.

So bring on more bike rides, more ‘time out’ with Veronika’s brothers….especially before they get to the age where they don’t want to do anything with me!

‪#‎siblings‬ ‪#‎veronikawillwalk‬ ‪#‎qualitytime‬ ‪#‎bikeride‬ ‪#‎timeout‬

Veronika Will Walk, our Ups and Downs with Cerebral Palsy's photo.

Journey to health….a reflection

22nd January 2016

When pictures of Veronika pop up in memories….I usually stop and realise just how far my girl has come.

When the 2 pictures in the top row came up yesterday one of the things I remembered was how irritated and red Veronika skin was when she was little….we have worked so hard with Veronika’s dietitian over the years figuring out what Veronika is sensitive to….if her skin is red and irritated on the outside one can only imagine how her gut health is on the inside.

Tonight as I was reflecting on the journey with her food sensitivities I look at how healthy Veronika’s skin is now compared to when these photos were taken.

It’s hard work making sure Veronika’s diet is free of the things she reacts to, but when I look at these photos and see how her skin glows and is so healthy it’s worth the effort 💖

Veronika Will Walk, our Ups and Downs with Cerebral Palsy's photo.
24th January

Helping Mum pick some veggies, and a strawberry from our veggie patch….home grown goodness…..

Check out that photo of Veronika squatting to reach into the zucchinis…..a little bit of therapy thrown in 😉

‪#‎veronikawillwalk‬ ‪#‎homegrown‬ ‪#‎veggiegarden‬ ‪#‎cerebralpalsy‬ ‪#‎trisomy21‬

Veronika Will Walk, our Ups and Downs with Cerebral Palsy's photo.

Life Skills….a trip to Hill Street grocer

19th January 2016

 

This afternoon after our appointment we went to Hill Street Grocer to get some fruit, veggies and meat

I parked the car and turned and asked
Veronika is she was going in her wheelchair?….’no’

So I asked her if she was going to walk?….’yeh’

Are you going to have your own basket?….’yeh’

Veronika picked a basket on wheels(of course) and one for me to carry. Veronika kept trying to push her basket and I explained and showed her how she needs to walk and pull the basket….it took a while as each time we stopped she again went to push it.

We got the fruit and veggies we needed and went to the deli to get the meat….I love how the staff interact and talk to my girl, not at her or ignoring her but truly talking to her….they pass the meat to Veronika and she puts it in her basket….

As we go to leave the deli to go to the counter to pay, Veronika realised her basket was to heavy for her and showed me she wanted me to carry some of the things she had. So we put them in my basket and went and waited in line at the counter.

Life skills…..it takes at least twice as long to do the shopping this way, but this time is an investment in my girls future independence

‪#‎veronikawillwalk‬ ‪#‎veronikashops‬ ‪#‎lifeskills‬ ‪#‎cerebralpalsy‬ ‪#‎trisomy21‬‪#‎hillstreetgrocer‬ ‪#‎walking‬ ‪#‎mygirl‬

Veronika Will Walk, our Ups and Downs with Cerebral Palsy's photo.

WOW…18th January 2016 Veronika see’s her rehab specialist

‘Wow’

One tiny word that packs a punch…..

Today Veronika saw her rehab specialist….

He came out to the waiting room where we were, and my girl stood up and took off walking up the hall…..and her specialist stood there, watched Veronika and said ‘wow’.

He hadn’t seen Veronika walking independently since her hip reconstruction.

We had her appointment, and as we got up to leave he said it was good to see us both and great to see Veronika walking so well….and Veronika walked all the way back to the car

‪#‎veronikawillwalk‬ ‪#‎princesswarrior‬ ‪#‎cerebralpalsy‬ ‪#‎trisomy21‬‪#‎hipreconstruction‬ ‪#‎rehab‬ ‪#‎walking‬ ‪#‎proudmumma‬ #oishim

Veronika Will Walk, our Ups and Downs with Cerebral Palsy's photo.
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What’s happening on Facebook?

Sunday = bowling

Veronika loves it!

🎳 The highlight for me would have to be when Veronika had 2 pins left (the second picture) after a bowl, when she bowled her second go, the ball went straight through the middle of the 2 pins, Veronika turns around says 'goal' and cheers for herself! Well I guess it was a goal as it went between them!! 🎳

#veronikawillwalk #bowling #AMFbowling #trisomy21 #cerebralpalsy #hemiplegia #downsyndrome #epilepsy #sleepapnea #friends #sundayfun
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This afternoon Veronika and I went to Petbarn Moonah for some cat food.

As soon as we pulled into the carpark Veronika signs 'fish' and does her best effort to verbally say 'fish' too.

Veronika loves looking at all the fish in the tanks....and saying 'hello' to them!

It amazing how Veronika can remember what she sees and where. Sometimes after bowling we drive home past Petbarn and Veronika says 'Mum' and points and signs 'fish'.

Veronika will often surprise me as we drive past a place we have been to before and she recognises it.

What a great life skill to be developing.

#veronikawillwalk #trisomy21 #cerebralpalsy #hemiplegia #downsyndrome #epilepsy #sleepapnea #strokesurvivor #fish #petbarn #hellofish #lifeskills
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Last century, yep back in 1999 I started working at Banjo's in town. Since then I've worked/managed across a few stores Rosny, Sandy Bay, Lindisfarne and for the last 7 and half-ish years Shoreline.

Last Friday I wore this name badge for the last time....as I have resigned.

This year I have been studying Education Support full time at TasTafe and loving it.....its been challenging juggling family life and all that involves, scheduling all Veronika's medical appointments around when I need to be at TAFE as best I can, Veronika has only had 2 hospital admissions this year *touchwood*, going to TAFE and doing my assignments and prac days, and working Friday's at Banjo's....plus from the beginning of this term I've been blessed to pick up a days work as a Teacher Assistant in a kinder class which I am absolutely loving 😊

So the time has came for me to leave Banjo's.....my boss has been great at accommodating my work hours around my needs as a Mum and a carer. I have loved working at Banjo's, I wouldn't of stayed as long if I didn't! I am going to miss my Friday shenanigans at work, with an awesome bunch of people.....Friday's probably won't be as crazy and animated without me there 😆

Thanks Banjos community for the fun and friendships formed over the last 17 years....I'm sad to leave but excited to continue this new adventure in eduction, only 3 more months of study to go!

As I embark on this next chapter on they journey I can't help but recall a conversation I had with one of the neonatologists when Veronika was only a couple of days old in NICU....part of the conversation was around the fact that my girl would need full time care and support her whole life, and that realistically I would be not work again as I would be not only her Mum but her carer....Just another challenge we had to prove a doctor wrong about!

#newadventures #nextchapter #teacherassistant #trisomy21 #downysyndrome #cerebralpalsy #hemiplegia #epilepsy #sleepapnea #educationsupport #tasTAFE #NICU #neonatologist #study
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