Veronika Will Walk

Never giving up

Ten things people with Down syndrome would like you to know

Swim 321 for t21

This Friday is World Down Syndrome Day(WDSD)….World Down Syndrome Day is a global awareness day celebrated on 21st March every year.

The date for WDSD being the 21st day of then 3rd month, was selected to signify the uniqueness of the triplication(trisomy) of the 21st chromosome, which results in Trisomy 21 or more often known as Down Syndrome.

In conversations I have had with people over the last almost 6 years since Veronika arrived, I have had people say things like….

‘I don’t know how you do it’ or

‘Your such a strong person, of course you will cope’ or

‘I couldn’t do what you do’

Statements likes these, even though they are spoken with good intentions and love, still shock me…. I often think ‘how do I do what?’

Love my child?

Of course I love Veronika, just like I love her brothers Jordan and Jakob.

You see love doesn’t count chromosomes.

I’m a Mum, a wife, a friend, a Carer, a therapist and an advocate amongst other things.

I remember back to when Veronika was around 5 months old, and I had has someone say something along the lines of ‘your such a strong person, of course you will cope’. I remember having a ‘moment’ and hating that comment…..because to me it felt like I wasn’t allowed to have those ‘moments’ when it all seemed so much because people ‘expected’ me to cope.

But love doesn’t count chromosomes….

And I love our three children dearly, and would do anything for them.

So here comes the crazy part….

I have always been a dreamer, a goal setter, a challenger.

The last 5 months I have finally started doing something for myself, physically and mentally. Last October my GP wrote another referral for me to have a steroid injection in my shoulder to treat the injury caused by lifting and carrying Veronika. I thought there had to be a better way than to have another injection. I figured if I could strengthen the muscles around my shoulder then that might help, and maybe help the constant back pain too.
When our eldest Jordan was at water polo training of a Saturday afternoon last October, Rachael a friend and I decided we might as well have a crack at swimming laps. I am not a lap swimmer, and never had been. Trying to ‘swim’ that 1st  50 metres that day, my lungs hurt, I mean really hurt. But slowly bit by bit I began to be able to swim further…..and now I can swim 2km…..

So I have decided to set myself a goal…

To swim 321km over the next year. Why 321? To represent 3 copies of the 21st chromosome = 321km

I will strive to achieve this goal over the year until WDSD in March 2015.

I want to use this swim goal to help raise awareness of people with Down syndrome, but also for Carers. One thing I have learnt over the last almost 6 years is that Carers tend to put themselves last on the list of priorities….but how can we continue to care for our loved ones long term without 1st taking the time to look after ourselves?

So this Friday March 21st, I will start off following the black line in the bottom of the pool, on my goal to swim 321 for t21…..I will swim for Veronika

1st day school

I hate Petechia…

The pathology request no parent of a child with trisomy 21(Down syndrome) wants to see with their child’s name on it.

petechia spot

 

Children with trisomy 21 are at an increased risk for developing leukaemia than typically developing children….

and petechia ( http://en.wikipedia.org/wiki/Petechia ) in children with trisomy 21 can be a marker for leukaemia….

the last few days have been stressful to say the least, from when I first noticed a petechia spots on Veronika, through to today when we saw her pediatrician.

In between the 1st spots, to the paed appointment, Veronika has had 2 blood test, both of which came back with an abnormal white blood cell count.

blood tests

but today I heard the best sentence from Veronika’s pediatrician I think she has ever said to me….

“Veronika doesn’t have cancer”

Even though she has an abnormal white blood cell count(low) it seems that this may ‘just be another one of Veronika writing her own book, not going by the book’ situations. Her platelet count is in the normal range, and the petechia spots have disappeared. She still has low white blood cells, and as the paed looked back over Veronika’s blood tests it appears that low white blood cell count, may just be how Veronika is. Which may help explain why Veronika has suffered with many infections over the years. Because her white blood cell count is low, thus she isn’t able to fight off infections.

I must also apologise to anyone who may of had a conversation with me over the last few days, if I appeared to be a bit vague(more so than usual) or a bit stressed. I hope you weren’t offended, but I had a lot on my mind.

 

 

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today I felt like I failed my daughter…

5 years and 4 months ago, at a routine 36 week into the pregnancy checkup my  world changed….

It was revealed our yet to be born baby had a severe brain abnormality….

28th april 2008

5 years and 3 months ago when Veronika was a week old, she had her first brain MRI….

Veronika's first MRI...age 1 week....they didn't need to sedate her for it, as she really didn't wake up for the 1st 2 weeks of her life...

Veronika’s first MRI…age 1 week….they didn’t need to sedate her for it, as she really didn’t wake up for the 1st 2 weeks of her life…

 

tiny Princess in such a big MRI machine...age 1 week

tiny Princess in such a big MRI machine…age 1 week

which showed Veronika had suffered a massive stroke to both sides of her brain, worse on the right side than the left side of her brain. We were told she wouldn’t be able to use the left side of her body and she would never walk….

That conversation I remember like it was yesterday, not 5 plus years ago….

I remember crying an ocean of tears, and then some more….because it wasnt fair, she had already been diagnosed with Down Syndrome, a congenital heart defect, and they were deciding if she needed neurosurgery to place a shunt into her brain to drain the excess fluid….

and now they were telling me she would never walk…

Some time over the next few days I made a promise to Veronika….

that she would walk, and she would walk into her 1st day of kindergarten,

that she would be independent…..and she would walk independently.

…and so the therapy started…

so today I found bitter-sweet…

Today I feel that on some level I have failed Veronika, I have failed on that promise, that she will walk independently.

Today I feel that I havent fulfilled my promise to her…

Today Veronika had her wheelchair fitting.

Today I placed Veronika into the smallest wheelchair I have ever seen

and then she smiled

she then placed her right hand on the wheel and propelled herself forward a little

she knew what to do to ‘make it move’ without being shown

and then she smiled some more

and then I knew I hadn’t failed her,

but that this is independence

not the kind of independence I had imagined over 5 years ago

but independence

photo-4

Veronika tires quickly, and can’t use her walking frame for long distances. So this will give Veronika a different kind of mobility. A more age appropriate ‘mobility aide’ than her pram…

and it will also be wonderful therapy for her for her left arm and hand, as she will need to use both of her hands…

So after her fitting we went back to school, and Veronika proudly wheeled herself forward just enough to get around the corner to show her classmates, who were just finishing of show and tell(perfect timing!).

After school Veronika’s brothers were excited to see Veronika and Jordan wanted to help Veronika

photo-3

 

photo 2

 

photo-1

I hate seizures….just sayin’

So Miss Veronika had a big seizure sunday last week during the night, that went for 10 minutes and we couldn’t wake her….She wasnt making any noise, and I only noticed her through the video monitor we have above her bed, that has a screen that we can use to watch her(this is the one we have http://www.uniden.com.au/australia/p_bw2101_index.asp )I was just about to go to bed myself, so I put the monitor back on the charger, and then went to put my heat pack in the microwave, on the way back to turn the TV off I noticed Veronika seizing….so I raced up to her bedroom…. and 10 very long minutes later she ‘came to’ and tried to sit up. We had already called an ambulance and they were on the way…

Veronika doing her own Ob's on admission to HDU at our local hospital

Veronika doing her own Ob’s on admission to HDU at our local hospital

Monday saw her admitted to HDU in our local hospital for a couple of nights, where Veronika decided she needed to do her own Ob’s, along with directing the Doctor to then check her ears, her mouth, her heart and her eyes, Veronika knows the routine!

Veronika’s recovery from the seizure wasnt too bad, she was tired, but this one didn’t seem to regress her langauge, Thankfully….but her left hand had become incredibly fisted and she wasnt really using it.

Playing with the cars in the toy room....

Playing with the cars in the toy room….

We went up to the play room, and Veronika wanted to play with the cars and the car park. Whilst we were playing with them, we had her iPad out with her communication app proloquo2go on it, and we were talking about up and down as well as the colours of the cars.

Later that afternoon the clown Doctors came and visited the ward, and Veronika had a lovely time singing, and blowing up balloons…

nothing like a visit from the clown doctors to put a smile on your face

nothing like a visit from the clown doctors to put a smile on your face

 

ukelele

Wednesday afternoon one of the Professors from the hospital, who we have talked to quite a few times before, came to see Veronika and myself, and asked if it would be ok to bring in a group of medical students to talk to us about Veronika’s diagnosis of Trisomy 21(Down Syndrome) and Cerebral Palsy. Of course I said that was fine, I feel that this is one way that we can give back to the medical profession for the care they show towards Veronika and myself. So we chatted to them for half and hour or so, and I hope they have left with an understanding of how amazing Veronika is, not because of any diagnosis she has, but for being the amazing strong determined beautiful girl she is.

Colouring in....working on colours

Colouring in….working on colours

The play therapist gave Veronika some  paper and textas to do some colouring in. So out came proloquo2go to work on colours, and before Veronika even picked up a texta she pressed ‘yellow’, then said ‘yellow’ and then got out the ‘yellow texta’….and I all but burst into tears, another milestone there and then. I was so proud.

And then there was the EEG, Veronika was so good, and sat really still while all the leads were ‘stuck’ onto her head…and while the EEG was done.

having my EEG

having my EEG

Veronika’s EEG didn’t show anything new, obviously it showed an abnormal result, but this was consistent with her brain injury. We were discharged with a big change to her anti seizure meds, and changes to her seizure management plan and will follow-up with Veronika’s Paed in a couple of weeks.

Discharged!

Discharged!

We had already booked in some intensive therapy with Veronika’s physio for the school holiday, so it was good timing for her physio to see Veronika post seizure, and to see the changes. So the end of last week and this week have been very focused on therapy….and we continue to work on Veronika’s left arm and hand as it has been really affected by the seizure, regression in skills is so upsetting following seizure activity….which is why I hate seizures….I hate the seizures and the regression that follows….

 

Veronika’s Therapy Angels

you may of read this blog I wrote during the week, just some ramblings that this time I published…

http://www.veronikawillwalk.org/2013/06/how-does-a-parent-decide-which-is-the-most-important-therapy-to-do/

I had a gorgeous friend Holly message me, and she said that maybe its time to fundraise and see if we can help get Veronika the funds for the therapy and equipment she needs. So we got chatting this morning we would like to ask you if you would like to become one of

“Veronika’s Therapy Angels”

What we would like to ask is if you could spare just one dollar a week, and donate that to Veronika’s therapy and equipment costs, by setting up a direct deposit into Veronika’s therapy fund account, and if you think you could afford to donate that dollar a week, set it up to automatically be automatically deposited every week… if just 10% of the people who are following and supporting Veronika’s journey to health and mobility on Veronika Will Walk would like to support Veronika by becoming one of her therapy angels, then that would raise $160ish a week, enough for one therapy session a week….the power of a simple dollar from one person, combined with a dollar from another person all adds up ♥

The other thing we talked about is that we would love to create an outdoor accessible area for Veronika at home, so that she has an area to just be a child and play, in a safe(fenced) environment that is suitable for her to navigate in her walking frame. Of course whatever play equipment we decide to put there would actually be therapy equipment disguised as play equipment(the therapy never really stops!), along with a concrete path(we currently have a lot of gravel) to the car so she can use her walking frame, so that I dont have to carry her to/from the car, as she is getting heavy to lift and I have an injury to my shoulder caused by constant lifting of her. We thought maybe if a few businesses or work places would like to display a donation tin to collect coins to put towards a safe outdoor play area that would be awesome. I would love to be able to have a safe accessable outdoor area for Veronika in time for summer. If you would like a tin please either comment here or send me a PM via this page as I will hopefully be making some donation tins in the next few days. We have been granted approval to seek charitable donations.

Please consider becoming one of “Veronika’s Therapy Angels” and if its something you think you would like to do her account is at MyState Financial
Account name Veronika A Davie
BSB 807009
Account number 60133947
IF you bank with MyState financial you will also need
Customer Number 1020674

Thankyou for continuing to support and follow Veronika’s journey to health and mobility….and please ‘share’ this idea on your wall if you would like to help get Veronika’s Therapy Angels started ♥

how does a parent decide which is the ‘most important’ therapy to do…

I have been struggling for a few months to decide which therapy to focus on ‘the most’ with Veronika.

Veronika has been accessing therapy well since she was only a week old, 1st was speech therapy because Veronika found it incredibly difficult to feed, and then physio soon after….then when she was discharged from hospital at almost 6 weeks old, she was refered to Early Intervention as well as our local paed rehab service provider. Speech and physio continued, and soon after occupational therapy.

Just after Veronika’s 3rd birthday, Better Start for children with a disability initiative funding was introduced. Its funding for children under 7 years old, who have been diagnosed with certain medical conditions. It is $12,000 to spend on early intervention services and treatments(see the link)…

http://www.fahcsia.gov.au/our-responsibilities/disability-and-carers/program-services/for-people-with-disability/better-start-for-children-with-disability-initiative

When this funding started, and Veronika was ‘signed up’, we decided to start accessing some private therapy….I for some reason thought the $12,000 of better start funding would surely see Veronika through until she was 7 years old, but then I did the math, one hour each of occupational therapy, speech therapy and physio therapy per week = over $25,000 per year!!! So realistically $12,000 wasnt going to go anywhere near as far as I first thought. SO I set up a plan in my mind, as to how we could stretch the funding to make it last ‘as long as possible’….however getting Veronika ready to start school in February of this year was also a huge priority…and well that used up a fair bit of Veronika’s funding, but it was funding well spent.

Now I feel I am left with a decision to make, that no parent should ever have to make….

how do you decide which therapy is ‘more important’?…

We have a limited amount of Veronika’s Better Start funding left, and we need to make a decision what do we focus on? What I always thought were the 3 main things

walking independently,

talking or

eating…

but then there is also her fine motor skills, how she uses her hands, or rather doesnt! Then do we focus attention on her left hand(her hand affected by her cerebral palsy) to give her the best function we can, but then we also need to focus on her right hand, because even though that is her ‘good’ hand, her fine motor skills are very delayed mainly due to her low muscle tone….

so I feel I am left with a decision to make, and it’s not easy…

 

on the way to the Wiggles.... nov 2012

 

 

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