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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Beautiful Angel ...

While we were at Oakridge Mall #Vancouver tonight Angel was very persistant that she had to talk to Santa as she had a very important message for him. There was a 45 minute wait so I tried to convince her to see him on a different day. But she was determined to see him tonight and personally deliver her Christmas wish to him. And so we waited. Angel's excitement grew and children nearby talked about the toys they would be asking Santa to deliver to them on Christmas eve. In response Angel told several families about her request to ask Santa. There were some amazed parents to say the least. When Angel reached Santa they posed together for pictures and then Angel got down to the reason she was there. She politely told Santa that Michael Bublé's boy was very sick. Santa acknowledged that he was aware of this sad news. Angel then asked Santa to help make him better. The lump in my throat grew huge as Angel spoke with Santa. A tear drop sprung from my eye. I'm quite sure Santa felt a similar reaction. He told Angel that he was worried as well. He said that helping kids heal is more God's job than his, yet he reassured her that both God and himself cared about Noah and they are both sending good healing wishes and love to him. Santa then promised to deliver Angel's love to Noah and to make sure that he received some very nice presents for Christmas. That gave Angel the happiest heart. As we were leaving Santa asked Angel for one more hug. It was a long one. ♡ It was easy to see that Santa's heart was very touched by his visit with Angel. She could have asked for a gift for herself but she didn't. She knew where her heart lie....in helping Michael's boy, and all of her other #HugginzKids, to heal. Angel's love is a true gift to our world. ♡♡♡♡♡ - Nurse Mom #HugginzByAngel #WrappingSickKidsInAWarmHug #moderndaymissionary #proudtohavedownsyndrome

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🌟 🎄⛄️JOY ⛄️🎄🌟

Miss Veronika loves her new Frozen Anna and Elsa
Hallmark keepsake Christmas Tree ornament that she picked out at Zing Pop Culture Australia.....

Complete with lip sync as Veronika sings along to 'Do you want to build a snowman'

Veronika and one of her brothers Jakob had a lovely time helping me put the Christmas tree up and decorating it this afternoon....

#christmas2016 #veronikawillwalk #trisomy21 #cerebralpalsy #hemiplegia #downsyndrome #epilepsy #sleepapnea #frozen #Anna #Elsa #zingpopculture #hallmark #decorations #christmastree #christmasJoy
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