When your baby is 1 week old, and she has her 1st MRI and the results aren’t what you thought you would ever hear, let alone something you never want to hear……Veronika has an injury to her brain from the bleed she had before she was born, and we believe that it will affect her movement down the left side of her body, and she will most likely never walk….

I guess at that point in you make a decision, one of two possible options i guess. You either think ‘oh well, if that’s how its gonna be, why bother,’ OR ‘Yes she will walk, and we will come back in when she does and say I TOLD YOU SO’.

Sunday, March 25, 2012

Veronika has her Second Skin(miracle suit…..)

Wow, wow, wow, wow, wow…..

I never thought Veronika’s second skin would make such a difference the minute she put it on the first time.

Even though this is her “I’m not to sure about this” face, I was shocked just how straight is makes her stand, and when she is sitting, there is no slouch…..well there is that much support in it, that she has no choice but to stand tall. Maybe it needs a much more suitable name, rather than ‘second skin’. I think Miracle Suit would be more applicable.

The main thing we have noticed since Veronika has had her Miracle Suit include improvement in her posture. This is because she has so much support in her core now. In turn this has caused a major change in the function of Veronika’s left hand. AMAZING how supporting the core of your body, can  cause your hand to work in a more natural way! As soon as the Second Skin therapists put Veronika into her suit, they sat her down on a little bench. I held some toys up above her left arm, and she immediately used her left hand to reach for the toys, instead of doing the bilateral right hand across her body.

This week Veronika’s therapists wanted to see her. You can see in the picture below that her left foot is pointing in, so one of her physiotherapists had ordered in some theratogs strapping tape, to strap her left leg into alignment. This is the before photo, but after she strapped her leg, her foot was in pretty much a perfect position(sorry I havent got a picture yet!)

Veronika is using her walking frame so much more. The front wheels are locked so she can’t steer it yet, not until she has much better control going in a straight line. We have been taking the walking frame out with us a lot more, there is a knack to fitting the pram and the walking frame, as well as the boys school bags in the boot of the car!

Veronika off to see the Physio at St Giles.

We also went to see Veronika’s private Occupational Therapist this week. She was amazed at the difference in Veronika…..the differences the Miracle Suit had made. Posture, gross motor skills, fine motor skills, endurance, but the BIG surprise that she noticed was that Veronika is making so many more sounds. She is trying hard to copy words that we are saying to her. We arent to sure if it’s a coincidence that she is making more sounds, if it is the second skin taking the pressure off her core, which in turn is giving her the chance to use that energy in another way…..verbally.
Cant wait to see what the Speech Therapist has to say about that this coming week when we see her!
And again we must say a BIG THANKYOU to TasPorts for flying us to Sydney for Veronika’s 1st appointment to have her assessments and measurements taken for her second skin, and also to Cerebral Palsy Tasmania for funding Veronika’s suit.


All ready to set sail….

Sunday we had a family day with Down Syndrome Tasmania Southern Families, at SailAbility. What a fabulous day we all had. They took the two bigger boats out in the morning, while others went on the smaller 2 seater boats. Then we had a BBQ lunch, and after that we went out sailing again.
Veronika’s oldest brother Jordan heading out in the 2 seater boat.
I was amazed how well the day went. It’s fantastic that there is something that we can do as a group that suits all our members of Down Syndrome Tasmania and all their different abilities and across the age range.  We are all there to support and encourage each other, and we as a family are Blessed to have such a supportive group of people around us.
Thankyou to Down Syndrome Tasmania and SailAbility for a wonderful day….cant wait to sail again one day!


Last week I took Veronika to the Childcare centre she is going to start at in a couple of weeks. She was so excited when we pulled into the car park. We have been there a few times in the last couple of months to pickup forms, drop forms in etc, and Jakob my middle child went there for almost 3 years, so I think Veronika might of even remembered when we used to go there every week to drop Jakob off or collect him.

So we pull into the car park, and as I unload the walking frame out of the back of the car Veronika is getting impatient…..I get her out and stand her in the walking frame, and then put her sun hat into the basket we have put on the back of it. I said to her to wait, while I get her lunch bag.
Patience is not Veronika’s strongest attribute……
I grab her lunch bag, and go to close the boot, as Veronika races across the car park to the gate, as fast as I have ever seen her go in her walking frame, her tiny legs could hardly keep up as her upper body was leaning so far forward. I was sure she was going to end up on the ground in the car park, as this was the first time she had taken off without me either holding onto the back of her walking frame or standing in front of her ready to catch her….but no, she got to the gate and gave me the old ‘hurry up and open the gate’ look.

I open the gate, and Veronika went thru, and continued towards the door of the childcare building, going as fast as she possibly could, the furthest she has ever been in her walking frame. She was going great, until she reached the incline up to the front door. This is where I had to hold the back of the frame, and encourage her to continue. She of course being the determined girl she is, didn’t need much encouragement, or maybe it was the fact that Pauline(one of the ladies that works there, who was so excited when I told her recently Veronika was going to start there soon), had seen Veronika coming and was standing at the top of the ramp cheering for Veronika……which in turn 4-5 boys who were inside came out to see what Pauline was making so much noise about!
Veronika made it up the ramp, with minimal assistance(I was extremely proud) and inside the door. We were there……she sat down out of her walking frame, pretty much exhausted, and went over to where some girls were playing with puzzles.

Soon after that it was time for outside play, so off outside we went…..Veronika had a lovely time climbing up onto the play equipment and going down the slide, head first of course!
That was until she saw the water play…..and well lets just say after Pauline put more water in it for Veronika, she managed to saturate at least 3 others as well as herself!
It was then time to go inside, and get dry clothes before mat time….during mat time, Veronika and I showed everyone some basic signs that Veronika uses the most to communicate. She then had morning tea, and after that we went. It was all in all a great orientation. All the staff are lovely and were full of questions about what they will need to do for Veronika while she is in their care. I know that when she starts (hopefully at the end of this week), she will be fine….I on the other hand…..

Fun family day at the Hobart Regatta

For those of you who missed The Mercury(our local newspaper)


Second Skin Sydney

Veronika’s Therapists had recommended that Veronika needed a Second Skin.


A funding application was made to Cerebral Palsy Tasmania, and they granted her application to pay for her Second Skin *insert Happy Dance from Me, to Cerebral Palsy Tas* in December last year.
The lovely staff at Second Skin said, if we could get Veronika to Second Skin in Sydney in early February, for an assessment and for measurements to be taken, then they would custom make her suit, and bring it to Hobart for us to have a fitting in March. Otherwise we would have to wait to March for the assessment and measurements, and would then have a fitting in May.
Me being me, decided that the 1st options would be much better. After all the funding for the suit was approved, and its something that I believe(along with her Physio and Occupational Therapist) will give Veronika better use of her left leg, because it will help with the stability of her pelvis. As well as better use of her left arm, because her core stability will be improved, helping her shoulder to become more stable, which should have the flow on effect to her arm and hand. So why wait another 2 months, when we could continue the ball rolling.
I made a phone call to see if we could get a hand to get to Sydney, as it was something Patient Transport weren’t able to cover, and we really couldn’t afford it. So I completely stepped out of my comfort zone and did something I never would have done before I had Veronika. I called Glen, who I had met last year at a fundraiser for Veronika’s best friend Willow. Glen works for TasPorts in Hobart, and they generously offered to fly Veronika and myself to Sydney for her appointment.*insert another Happy Dance*


Waiting for the Plane…

Veronika loved the 2 plane’s we went on up to Sydney(we had to change planes in Melbourne).  As soon as we landed Veronika was signing ‘more’, before she waved  and blew kisses to everyone that was getting off the plane, while we were waiting for her wheelchair to come to the plane so I didn’t have to carry her!
Veronika’s Second Skin appointment was Tuesday at 10am. The ladies at Second Skin are just lovely. The therapist that we saw had some fantastic ideas for once we get Veronika’s Second Skin, and some of them we have already put into place, while we wait for her suit. We were at Second Skin for about an hour and a half, while we talked about goals for Veronika, and for her measurements to be taken.
My brother, Damo was in Sydney on a holiday, so he picked us up after the appointment. We had about 3 hours to fill in before we needed to head back to the airport. Damo said ‘you cant come to Sydney, and not do the tourist thing’(I hadn’t been to Sydney since my School trip in Grade 10, and I’m not telling you how old I am either!). Damo drove us to North Sydney where he was staying, and we decided to walk over the Sydney Harbour Bridge, and then along ‘The Rocks’, to around near the Opera House, where we stopped for a coffee.

 About half way over the Bridge.

Along “the Rocks”, with the Sydney Opera House in the background

After we stopped for a coffee, we decided we would finish our walk along thru the Botanical Gardens, to Martin Place to the train station, to catch the train back to North Sydney. Yes Veronika loved the train ride too, and I was glad we decided not to walk back! We would have missed the plane, and I didn’t really want to carry Veronika in the wheelchair up and down the 50 or so stairs to get on and off the Sydney Harbour Bridge again!
Damo dropped us off at the airport and we waited for our plane…..Veronika was so well-behaved on our trip to Sydney. She only became upset on 1 of the 4 flights we had to go on much to my relief. The rest of the time on the plane she was too busy making friends with the flight attendants and the passengers.
Now I just have to wait patiently for her suit to be made….

Finished Eating

We have been working with our new speech therapist from St Giles to help with Veronika’s nutrition. One thing that the speechy at ECIS made for Veronika to use, just before Christmas was a finished sign.

Thats the black and white circle next to Veronika’s plate.
As you know Veronika hardly eats anything, and often we end up with an upended plate on the floor. I had been trying to figure out how to stop her throwing her plate when she has had enough to eat. The Speechy we were seeing thru ECIS, thought maybe the finished sign might help.
It seems to be working. Not that Veronika is eating any more than she used to….and now I am putting less on the plate to minimise the risk of having to pick it up off the floor. But Veronika has been putting her plate on the finished sign, when she has had enough, and now I don’t have to pick up anywhere near as much off the floor as I had to before!
Veronika putting her plate on the sign.

Therapy, Therapy and more Therapy

We are well and truly back into the swing of therapy, therapy, therapy. It’s fabulous that we live where we do, and that we have to opportunity to go to early intervention therapy…..but at the same time, it’s so much running around. More so in the school holidays, Veronika has 2 older brothers, and I find myself dropping one of the other off to the grandparents, so I don’t have to take them both to Veronika’s therapy sessions. When I am being charged $155/hour for her private therapy I kind of really want to be able to fully concentrate on what Veronika’s therapists are telling me.

Her OT was so super happy when we saw her this week. We have been using a pressure vest to help with her core stability, which in turn helping her left arm function a little better, because she isn’t having to work so hard at stabilizing her core. This all means that Veronika is sitting a lot ‘taller’, and standing a lot ‘taller’, because her muscles are supported, as well as she is getting much better function out of her left arm. We still have so much work to do, but it’s so encouraging to see how much difference something can make in conjunction with all the therapy we do at home too.

Veronika is loving trying to use her walking frame, and most of the time she is smiling and happy.
She is getting stronger all the time. Its fabulous to see. But the OT is now concerned about her left foot, even though she did say that legs aren’t her thing(its more of a physio thing). So she suggested I go and get some pressure shorts made, which I did this week. We are hoping that they will help stabilize her pelvis, so that her muscles arent working as hard to get her leg in a natural position, thus fingers crossed she will get better function out of her left leg.
Marcus picked Veronika’s pressure shorts up on his way home from work last night. She had them on for a little while, but I didn’t get a photo. And today was way to hot to put her into them. They have velcro down the sides so we can get them on/off easily.
So hopefully between the pressure vest and shorts, we will be seeing more progress…..oh and of course all the therapy, therapy, therapy we do too.

Woohoo for concrete

What a fabulous couple of weeks we have had……we finally have plans back from council, approved and ready for us to start building Veronika’s Hydrotherapy room. It has been a very long, slow process…..but I just keep thinking it will all be worth it when it’s finally finished. I guess the one bonus that it has taken so long is that it has given us time to plan better, and do a couple of things we otherwise might not of. One being putting a toilet in the Hydrotherapy room……it may not seem like a big thing, but down the track it will be. I always thought, well I can just carry her back inside to use the bathroom in the house if down the track she isn’t mobile enough to go back inside by herself(that is of course after Veronika is toilet trained!).
When we got the plans back from the Draftsman, it was one of the 1st things I said to my husband…..we need to put a toilet out there……what made you think of that was his reply…well I guess it just dawned on me, that she’s only 13kg now, and I can carry her quite easily, but when she’s 7 if she still isn’t walking, chances are Veronika will weigh a lot more than 13kg, and I had just had a steroid injection in my should because I injured it lifting her. So now the plumbing has been done in the slab, and we are going to have a toilet as well as a shower.

Veronika was sitting inside the sliding door keeping a close eye on the guys doing the concrete. When he was washing down the window, where the concrete had splashed, Veronika was blowing raspberries on the glass.
The wonderful team at JDM Contracting donated the concrete slab. They did even more than I could possibly have imagined. They concreted back to the house, so it will be level to the back door, and along to the sliding door at the dining room. Veronika is very Blessed to have such wonderful people do so much for her. This will enable us to have an outdoor therapy area as well. Well that’s the plan…..
An added bonus that Veronika has a concrete slab is now she has somewhere outside to ride her
skatecar…..which she LOVES