Veronika Will Walk

Never giving up

Ten things people with Down syndrome would like you to know

my girl and this cup…

My girl and this cup…..

At 7 years and 8 months old Veronika is getting the hang of drinking thickened fluid out of this cut out cup.

We have spent years(and lots of dollars)with therapists and every different type of cup, sipper cup, bottle, and straw made to try to get her to drink out of something other than her bottle and teat.

From when Veronika was a newborn in special care and we were trying to her her off the nasal gastric tube feeds, we had to use a special bottle called a haberman feeder. It was the only thing she could manage. She used that for months before we were able to transition Veronika to a regular teat.

Having dysphagia makes it hard for her, but I can finally see a light at the end of the tunnel.

Veronika hasn’t had a bottle for 7 days….a whole week!!!!

I’m spending an hour and a half to 2 hours a day sitting holding the cup for her to get enough fluids into her to keep her hydrated as she can’t manage to hold the cup yet herself, but I’m just so excited to finally be getting somewhere with her drinking.

It’s a huge milestone for our girl that we have been working on for years 😊🌟

I must say a huge THANKYOU to the gorgeous ladies Sue and Priscilla atMedela Australia for supporting Veronika on her journey…we have been buying teats in bulk at a discount from Medela for years because Veronika going through so many.

‪#‎veronikawillwalk‬ ‪#‎veronikawilldrink‬ ‪#‎medelaaustralia‬ ‪#‎cerebralpalsy‬‪#‎trisomy21‬ ‪#‎dysphagia‬ ‪#‎peptijuniorformula‬

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

Upset at pathology because she wasn’t having a blood test!

You know your a special needs parent to a child who writes their own book….

When your child screams down pathology

Because

Veronika wasn’t having a blood test(I was) and Veronika wanted one done!

I don’t think the pathology lady knew what to make of the situation, Veronika was crying real tears and holding up her arm for a blood test…. I told Veronika the pathology lady wasn’t allowed to take her blood without a form from the doctor.

The pathology lady said she had never had a child scream and cry because they weren’t having blood taken, but a happy compromise was Veronika got a bandaid when I had one put in my arm.

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

For all the special needs mummies, daddies and carers I know…

For all the Special Needs mummies, daddies and carers that I know and totally rock:

1. Because they never thought that “doing it all” would mean doing this much. But they do it all, and then some.
2. Because they’ve discovered patience they never knew they had.
3. Because they are willing to do something 10 times, 1,000 times if that’s what it takes for their kids to learn something new.
4. Because they have heard doctors tell them the worst, and they refused to believe them.
5. Because they have bad days and breakdowns and bawl fests, then they pick themselves up and keep right on going.
6. Because they manage to get themselves together and out the door looking pretty damn good. Heck, they even make sweatpants look attractive.
7. Because they are strong. Who knew they could be this strong?
8. Because they aren’t just mums/dads, wives/husbands, cleaners, chauffeurs, cooks and women/men who work. They are also physical therapists, speech therapists, occupational therapists, teachers, nurses, researchers, coaches and cheerleaders.
9. Because they understand their kids better than anyone else does – even if they can’t talk or gesture or look them in the eye. They know. They just know.
10. Because just when it seems like things are going OK, they’re suddenly not, but they deal. They deal even when it seems like their heads or hearts might explode.
11. Because when they look at their kids they just see great kids. Not kids with cerebral palsy/autism/Down syndrome/ADHD/developmental delay/whatever ‘label’.
(Author unknown)

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

7th January 2016…my girl surprises me, call the doctor

Wow…..sometimes my girl surprises me big time with what she does.

We have just got back from my parents because I noticed Veronika’s ear was infected and she needed to see the doctor. The joys of having a child with such a high pain tolerance level you don’t know anything is wrong until it’s clearly obvious like an oozing ear.

Unfortunately where we live is out of the area for call to doctor to come and visit us, but they would see us if we went to an in area place, so wewent to my parents home to wait.

Veronika was watching Garfield on her iPad, and when the doctor arrived, he was asking me for Veronika’s medical history, and was then getting out his things to check her obs.

Veronika wanted to sit on my lap and indicated she wanted my phone. I gave it to her and she opened up the videos…..and this is where the WOW hit me. She opened a peppa pig video, and scrolled to where Peppa is sick and the doctor goes to visit Peppa at her home…..just like how the doctor was visiting Veronika.

The doctor said Veronika’s ear has a quite nasty infection, and he wanted to keep Veronika from needing to go into emergency…..so he contacted a couple of people to check the plan he was thinking was suitable and they all agreed…..so a dose of medicine from the doctor, a couple of scripts to fill first thing in the morning and he wants Veronika to see our GP on Friday.

Let’s hope Miss V sleeps ok tonight

Almost made the 1st week of January without a medical appointment….

‪#‎veronikawillwalk‬ ‪#‎cerebralpalsy‬ ‪#‎trisomy21‬ ‪#‎callthedoctor‬ ‪#‎earinfection‬‪#‎wowmoment‬

5th January 2016…more life skills

‪#‎lifeskills‬

This morning I came out from cleaning the bathroom and Veronika was putting a load of clothes into the washing machine….she then opened the detergent drawer and pointed up into the cupboard for me to get the detergent out…so I did!

As soon as the load finished and Veronika heard the beeps she went up to the laundry and yelled out ‘mum’. I went to see what Veronika was after and she was pointing to the basket that hangs above the machine, and then she got all the washing out.

My little helper…..so proud of these life skills Veronika is developing.

Veronika isn’t able to reach the line to hang them on, however she loves to help by passing me one thing at a time and I hang it out.

‪#‎veronikawillwalk‬ #lifeskills ‪#‎mylittlehelper‬ ‪#‎cerebralpalsy‬ ‪#‎trisomy21‬

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

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Life skills

Veronika and I went to Woolworths after bowling today.

Veronika wanted to buy some chips, which is a staple food of hers.

I always have a look on the signs hanging from the roof to tell Veronika what number she needs to look out for.

Today she had to find number 7.
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Miss Veronika received a principals award at school on Monday, for 5 star awards, and her brother Jakob did too 😊#veronikawillwalk #grade3 #principalaward #5starawards #school ...

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