Second Skin Sydney

Published 12 February, 2012 | By Kylee | Edit

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

http://www.secondskin.com.au/

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*

http://www.tasports.com.au/

 

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

Published 12 February, 2012 | By Kylee | Edit

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

Published 28 January, 2012 | By Kylee | Edit

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

Published 28 January, 2012 | By Kylee | Edit

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

trip to the beach....

A quick post with a couple of photos...

We had a family trip to the beach last weekend, the boys go to a siblings program for siblings of children with disAbilities, and last weekend they had a surfing lesson day.

Veronika loves water, and was bursting to get into it....

For a brief moment I thought she was going to head all the way out to sea!!

But then she realized the waves weren't really to her liking....and she was happy to splash in the shallow water.....until it was time to go, and she let everyone within a 10km radius know!!!

I love school holidays, especially the Christmas ones.

I love school holidays, especially the Christmas ones.

I love not having to rush every morning, trying to get Veronika to drink her formula and eat her breakfast, so we can get her brothers to school on time, but one of the things that I love most of all is that her therapists have a couple of weeks of over Christmas and the New Year, the bonus for me, we don’t have to rush around to Veronika’s therapy appointments, well not for 2 weeks anyway!

But

Tomorrow is a new week, from tomorrow my diary is looking ‘busy’ again. We have at least one appointment every day this week, and then I go to work Friday.

So

Its been a nice quieter couple of weeks…..lazy mornings with the family and not rushing, but tomorrow we will be back to our 'normal' routine....starting at 10am with the OT!

What a great year for Veronika....

another year has flown by.

At the beginning of each year since Veronika's birth, I have kind of had a list of things I wanted her to achieve by the end of the year. Most of these things carried over to the next year, as she hadn't got anywhere close to achieving them. We have a planning meeting booked for February this year with her therapists, so no doubt we will be revisiting the last 6 months goals, and setting new ones.

The 2 big things in 2011 were to be able to hold her own bottle, and obviously walking.

As you may of read earlier last year she mastered holding a bottle in March. I was so excited, as this was something we had been working on for over 2 years, and would give me an extra 2 hours in every day. Why do you say, well Veronika had 4 bottle of her prescription formula a day, and each one would take about 30 mins, adding up to 2 hours a day.

This was the day Veronika 1st held her own bottle.

Veronika still only holds it with her right hand, but she is getting better and not 'fisting' as much with her left hand. 

And obviously getting a walking frame and trying to use it a little, is a huge STEP in the right direction. After the initial issues with needing new AFO's, then new shoes to go over the AFO's, then realizing the AFO's needed to be cut smaller at the front, then needing new shoes again(smaller ones). Veronika is becoming more stable in a supported standing position all the time. Today I really realized this, when she was standing up against a soft inflatable bouncing thing she got for Christmas. 

 Therapy sessions at home, are not always enjoyable, and sometime I just have 

to not push Veronika any more. When she is tired, or hasn't had a sleep, or 

she just wants to play with her brothers.

I would hate to think how many appointments we managed to get through last year. I used to think before I had children what did I use to do with all my time. Now I wonder what I used to do with my time before I had a special needs child. As you know I wouldn't change anything about her, as Veronika is perfect just the way she is. Veronika has taught me so much in the last 3 and half years, and for that I am grateful.

Then there are the hard times, like when the Physio(at St Giles) that has been looking after Veronika since she was 8 weeks old, tells me she is going on 6 months long service leave. Part of me was happy for her, as she deserved her leave, but still she knew how to get the best out of me, to get the best out of Veronika. She had been working with us for 3 years. Then a few days before Christmas, my suspicion was confirmed, when I saw her at Veronika's Freedom Wheels assessment, that she had resigned and was finishing up the following day. We have been seeing another physio there since she went on long service, and we have formed a really good relationship, although I don't think I have cried on her yet!

The day before that her Occupation Therapist(St Giles) had called to say that she had also resigned, and wouldn't be able to see Veronika on her next scheduled appointment, as she would of finished up by then. Hopefully we will be into see a replacement therapist soon.

We have been enjoying a few days at home over Christmas/New Year. I think that is one of the added bonuses at this time of year is that all her therapists go on leave for a couple of weeks so means we get a couple of weeks off running from one therapist to the next. It all starts up again next week, but that's fine, as I strangely miss her sessions with her therapists. 

All in all 2011 was a really good year for Veronika. We had the usual trips to the emergency department, but only one week long admission to the ward. Yes we still spend a lot of time there are various clinics, but that will always be the case. 

I am looking forward to an even better 2012, with many more exciting things to come. 

BUT, I did realise yesterday, that my baby will be going to school next year(2013), and sadly even though I think she might be ready, I am almost certain that I wont be....