International Day for People with DisAbility

What a great day...well apart from the rain. But then us BrightStars seem to attract the rain when we plan to perform outside!

We had the pleasure of dancing at International Day for People with Disability, with our BrightStars.

After the dancing I had a really good chat with a Mum who I haven't seen for a while. Its so good to talk to friends outside the walls of the hospital or various places we take our children for their therapy. We caught up on the last 6 months or so....the highs and the lows we have been thru, and about where we are heading next year with our children....The if you don't laugh you are going to cry....But more importantly we talked about how blessed we are to have these amazing children in our lives. How often children like ours are referred to as 'special' children...but how we feel that we are the 'special' ones, special that Veronika chose us to be her family, and special that her little man chose their family.

As parents we often think we get to choose who our children are, but its more a case of our children deciding that they wanted to be in our family. Yes its not an easy job, being a  parent, let alone being a parent of a child with 'extra' needs....but WOW its worth all the effort.

When Veronika smiles, everyone who sees her smile, smiles with her. She some how has been Blessed with the Ability to make a person smile, even when they are having a really hard day. For that I am grateful. I guess that I decided a while ago that if Veronika could change how one person views people with disAbilities, that she could have the Ability to make people STOP and enjoy life and not rush through it, to make people see that people with disAbilities are real people, people that contribute to Society for the better, then the world would be a better place. I think that Veronika has opened many peoples eyes, to accept her for who she is, that she is not the little Downs girl, but that she is Veronika, and she happens to have DS and CP and a Congenital Heart Defect....but none of her diagnosis define her. Yes they are a part of who she is, but not what she is. And the flip side of that.....I am often known as Veronika's Mum, but very proud to say that yes I am Veronika's Mum, and I love her to the moon and back, and WOW look how far she's come.

May 2008....

 

 

to now.......

procrastination.....

I finally got around to it......or maybe I was finally in the right mindset to do something that I have been putting off since Veronika was 11 months old.

The later was the correct answer.

As you know Veronika was diagnosed with Cerebral Palsy (left side hemiplegia) at 11 months. When she was diagnosed with CP....that was the hardest diagnosis for me that she had been given. I knew that she had the stroke before she was born, and that she had brain injury from that. And yes we had been told she would most likely never walk. But I guess I had never really made the connection that she would be given another diagnosis. Up to the time when we went to see the Brain Injury Specialist, I had be over analysing everything Veronika was doing with the left side of her body, along with her physios. It was at around 9-10 months of age that there was becoming a significant 'tone' difference, as well as a very different amount of use in particular between Veronika's left and right arms. So we were referred onto the Brain Injury Specialist.

I guess that day I had no idea that I was going to get yet 'another diagnosis' for Veronika. I thought I was just going to have a chat with yet another Doctor about Veronika and how she was developing, in particular the left side of her body......maybe DENIAL is a more accurate description of how I was around that time. I remember that day like it was yesterday. I remember holding it all together while I was seeing the Specialist with Veronika, I remember that exact moment he said she has Cerebral Palsy.....I remember him giving me the forms to register her on the Cerebral Palsy register.

I also remember holding it together enough until I got to the car, strapped Veronika into her seat, and then sat in my seat and just cried. I called my husband to tell him, and also gave him the "but its not fair, how come she has to have Down Syndrome and Cerebral Palsy?"

I didn't know what to do next....so I went to my Mothers of PreSchoolers group, and held Veronika close while I cried some more, while I talked with our mentor and a couple of the other Mums I was close with.

So what have I finally got around to.....I finally filled in the forms for the CP register, and hand delivered them. They have been on my kitchen bench for over 2 and half years, they have been into hospital on a couple of trips, thinking that I would 'make' the time to fill them out while I was sitting, filling in my days while Veronika was unwell. You may be wondering why its taken me so long. Its like admitting that yes Veronika has CP. Once she is on the register its official. Don't get me wrong, I know she has CP, after all I'm not stupid(or not that stupid anyway). But its kind of like, yep its official, Veronika's on the CP register, so she really has CP. Its a feeling that's really hard to explain, maybe that its almost like I'm not in control or something.

But life goes on, and I am proud that I have finally filled them out and delivered them.

Tomorrow is a new day, all be it with more appointments for the week to come.

 A coulpe of Pics from the Special Childrens Christmas Party. 

Veronika and Jakob had their faces painted....

I have learnt it good to say I'm Proud.....and PROUD I am

Veronika got a walking frame 3 weeks ago. This was the day she got it....those of you who know the journey we have been on.....Veronika's journey to mobility.....after being told after her 1st MRI when she was 1 week old, she would not walk....well there are no words to describe how over joyed I am, how proud.....I think the video speaks for itself. I watched it over and over and over, not believing that Veronika had taken some steps in a walking frame. PROUD.

I then taught her to sign 'clever', as when we showed people her video, they would always say how clever she is. Last week we went back to see the physio that gave us the walking frame. She said to Veronika, 'are you going to show me how you can use your frame?' So I put Veronika into it, she took 3 steps, and started to sign 'clever', when her Physio said Veronika put your hand back on, you need to hold on with both hands......I said to her, 'she's telling you she's clever'. Her heart just melted, and agreed that yes Veronika is clever, but she still needs to hold on with both hands.


I managed to get thru 8 doctors/allied health appointments for Veronika last week, and 2 for me. I had a steroid injection in my shoulder on Friday, as its been quite sore for a few months, and Veronika's physio told me I should get it looked at. Well she was right(of course) and yes I did need to look after it!

So i figured if I could get thru so many appointments last week, then I could have a quieter week this week, and maybe even a bit of time at home, so I don't have to carry Veronika around every where. And yes I have managed to get a bit of time at home with my Princess. Just as well, because I had a look at my diary today for next week, as one of Veronika's physios wanted to change her appointment forward by half an hour for next Tuesday. Ummmm.......somehow I have managed to book 9 appointments for Veronika next week(including her school, but still have to find time to get her to St Giles hydrotherapy), so looks like next week is going to be full on too!

Oh well, life is to short not to be busy.....

I just remembered too that I owed you a photo for Down Syndrome Tasmania's Buddy Walk. Despite the fact that it drizzled/rained all day, we had a great turnout, and a great time at the Buddy Walk.

 Veronika and Nanna pushing her

Walking thru St David's Park

.....and the end of the day, was a long day and right about this time Veronika was over it!

St Giles Walk With Me...

I cant believe how fast the last 2 weeks have gone....

Veronika was an Ambassador for St Giles Walk With Me(on October 16th), and the day was fantastic. The weather held off for the most part. We have been going to St Giles since Veronika was about 8 weeks old, so it's was really good to be able to give back to them, as they have done so much for Veronika. I have a couple of pics from the day...

Veronika with the Pied Piper and Giles

On Walk With Me, Fairy Veronika and Mummy

The BrightStars Dancers then Performed

 After the walk we had a couple of 1st.....Veronika had her face painted, well her cheek. A flower to match just the same as Willow's.

Isn't she pretty....

 and the other 1st was Veronika(and Willow) went on the jumping castle.

don't they look deep in conversation here?

Ten things people with Down syndrome would like you to know

Just because I wasn't busy enough.........

You have probably heard about the Better Start Funding....its funding for additional early intervention therapies. We are blessed that Veronika's diagnosis fits the listed diagnosis to qualify for the funding.

I had been think for quite some time about getting Veronika additional Physiotherapy and Occupational Therapy(OT). I registered Veronika under the Better Start funding in July, and last week I made a few phone calls, spoke with a few friends with little ones with additional needs as to who they see privately, and then spoke with some therapists.

I talked with an Occupational Therapist and we decided to see her fortnightly until the end of January, and booked all the appointments in......(just hope I don't loose my diary, should write them all on the calendar at home too i guess!).

I also talked with the Physio that has seen Veronika thru her school(ECIS), and we booked to see her in November, but I requested to see her early if she got a cancellation. I had a phone call on Monday, they had an appointment for Tuesday(yesterday) so I took it.


So yesterday morning we went to MyTime(support group for families with pre schoolers with additional needs) then went off to see the Physio. We didn't need to waste any time with a history as she 1st saw Veronika when she would of been around 8 weeks old. She wants to get her into a second skin

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

as that will help so much with her core stability, which will in turn help with her arm/leg function. She has given us some things to work on at home.

We then went to see the OT. She has so many fantastic ideas for Veronika. I was shocked how quickly the OT got Veronika to do what she wanted. Just really simple ideas, things that won't cost anything, that we can work on without having to go out and spend heaps of money that we don't have! One of the 1st things she did say though was, "I want to see her in a second skin".

I find it amazing how things happen, as I emailed her Physio at St Giles last week asking her to look into if a second skin would be appropriate for Veronika. I got an email back Monday, saying she had looked into it and she would talk more with me about the clinics that the second skin people do down here when she saw me on Wednesday(today). I think the private OT and Physio confirmed that yesterday, and today I told the physio today that Veronika needs a second skin. So now I am trying to figure out the best/fastest way to get one for Veronika!.

As we were leaving the OT yesterday, the Speech Therapist that I had called and spoken with about seeing Veronika privately had a quick chat with us. Her books are full and she isn't taking new patients, and recommended someone else in the same practice. She said she would be following Veronika's progress. She 1st met Veronika when she was about 7 weeks old and had not long been home from hospital, as Veronika's oldest brother was going to see her for Speech Therapy. So I looked at the receptionist to make an appointment, and she had just had a cancellation for today, so I took it.

So today we started private speech therapy! Oh the ideas she had.....

Can I just say my mind is full of the possibilities......

there is never a dull moment....

Yet again, so much has been going on......

Veronika was asked to be an Ambassador for St Giles Walk With Me. It is on this Sunday 16th October. Starting at the Lawns of Parliament. Veronika has been going to St Giles since she was 8 weeks old. We started off seeing a Physio there and an Occupational Therapist and continue to. We have also seen a Speech Therapist there, and its the St Giles pool that we go to weekly. So it was our pleasure for Veronika to be an Ambassador and give a little something back, to St Giles who have supported us so much on her journey to mobility, and continue to.

Veronika and Willow have joined forces and have registered a team for Walk With Me, and naturally their team is Walk With the SuperGirls.....explains itself really. If you are free this Sunday please come and show your support for Veronika, and Walk With Her, or if you want you can follow the link and donate to Walk With the SuperGirls.

http://wwmhobart.gofundraise.com.au/page/SuperGirls

 Veronika and Willow....our SuperGirls

As you know from my blog in September, Veronika has begun to 'cruise' a little bit along the blanket box. So today was a very exciting day, we went to get her measured for a walking frame. Her physio was going to put the order in today, so fingers crossed it will be ready Wednesday next week, when we see her Physio next. Then to see if she can manage it with her left side(side affected by Cerebral Palsy). In particular her left hand, as we don't know if she will be able to hold on to support herself.

I have spent the last 2 weeks stressing over how much Veronika is drinking, or rather not drinking. She usually drinks close to a Litre of formula, but for the last 2 weeks she has all but stopped eating, and is only drinking 350-400mls of formula. I called Paediatric outpatients asking to see her Paediatrician, and was able to get an appointment 3 days later, when she was next in. In the mean time, they said take her to the GP and get her checked that there is no reason she isn't drinking. Of course the GP couldn't find anything, and agreed that yes she did need to see her Paediatrician, and was glad we had an appointment. When we went to see her Paed, as we were going into her room, she was commenting on how well Veronika was looking.....I agree yes she is looking the best she has looked in a very long time....she just wont DRINK. She asked Veronika if she drinks, to which Veronika signed "drink" followed by "milk"....and then she asked her again if she actually drinks, to which Veronika grunted and shook her head. After a thorough look over, she could see no medical reason Veronika wouldn't eat, except to "stress her mother out"....."which appears to be working". Yep had to agree with that diagnosis! Her Paed was very impressed that Veronika could 'cruise for her chocolate', and said maybe we need to use some old fashioned bribery and corruption.....

If you drink this(showing her the bottle of milk)....you can have this(a piece of chocolate)!

So we are back to checking her often for signs of dehydration, but as she continues to look so well, there is no point going to the emergency department.

We have finally got  the plans for Veronika's Hydrotherapy room that we are building. They have been submitted to our local council, so fingers crossed we can get things rolling a bit faster from here on. I cant wait for the end product, but I know that it will be worth the wait. Veronika is going to love getting in the water every day. I can just picture her sitting at the back door pointing out to the room, and signing swimming. 

 In my spare time I am also helping organise Down Syndrome Tasmania's Buddy Walk.....   This will be on Sat 29th October. BrightStars will be dancing at Salamanca at 12 noon, followed by activities and a BBQ on the Lawns of Parliament, and then we will be off to walk around Salamanca at 2pm. It is going to be an action packed weekend, as our North West BrightStars Dance Troupe will be touring the south of the State.

So between Veronika's regular appointments, St Giles Walk With Me, following up on the Hydrotherapy room, Organising Down Syndrome Tasmania's Buddy Walk......as well as following up on other allied health appointments there is never a dull moment in our home, and as soon as I cross 1 thing off my to-do list, I seem to add 2 new things...