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....

November(yes I am a bit late with this blog)

I knew November had been a super busy month for Veronika and I. December continues to be busy, but I think November must of been our busiest month in 2011. December 1st saw us waiting at the Royal Hobart Hospital for Veronika's ENT appointment. While we were waiting, I thought to myself, November was so busy that I'm glad its over. I got out my diary, for interests sake and counted how many appointments Veronika had in November 1,2,3,4......23,24,25. Yep that's it 25. Not to shabby to get thru 25 appointments for her in one month. Especially considering that I had steroid injection in my shoulder early November(a side effect of lifting/carrying a 3 and half year old that cant walk), and had nearly the full week following at home, 'taking it easy'.



Some of those appointments included getting both legs plastered to make new foot orthotics(AFO'S). Veronika was surprisingly tolerant of having this done. It really doesn't take that long, but all the same, it must be weird for her. To have someone do that to your leg, then just before it sets, cut it off to use for the AFO's.

The finished casts, ready to be used to make the new AFO's.

We have been seeing a private Physio, Speechy and Occupational Therapist. I am so thankful that Veronika is eligible for the Better Start Funding. It is going to make such a difference. We have been seeing the OT fortnightly and Veronika gets so excited when we go down the lane way. It didn't take long before Veronika recognized where we were going, and as soon as she sees her OT she starts signing 'bouncing'. One of her favourite things to do there. It is amazing that the few simple warm up exercises(swinging/bouncing) can get Veronika's left arm functioning so well, and then when we sit at the table to do some work, in particular reaching with her left arm. I have been completely amazed the last 2 times we have been. When we sat at the table to do some 'work', this week I held up the people for her to reach to play with at the dolls house, she instantly reached with her left arm. She didn't even go to reach with her right one (something that she has mastered). I must say even thinking about it almost brings a tear to my eyes. There are days that I think how is Veronika ever going to be able to do those things that require 2 hands, like tying shoe laces(yes I know about Velcro) let alone getting on a pair of shoes with only one hand, using a knife and a fork, brushing her hair and putting it up in a hair band.....but maybe one day all this will be possible. Yes we have a long way to get there, but at the same time she is only 3, and so we have a lot of time to get her left arm and leg functioning. 

Veronika is learning new signs all the time and her vocabulary is expanding(mainly with signing, but she is getting new sounds). The other day she was watching a signing DVD about numbers. And she started looking at her fingers, she put her index and middle fingers up, and started making a ....t,t,t,two,two... sound. So now everyday, we have been asking her what this is(us putting up two of our fingers) and she is saying 'two'. Last week when we saw the Speech therapist she played a game with 'verb' cards. They had pictures on them of actions, like kicking, eating, brushing, washing, crying, smiling, catching etc. The speechy held up 2 cards at a time and said an action, and Veronika had to choose the right card and put it in the box. In the 1st lot(of 10) she hesitated at 'smiling', but when I said 'happy' she took the right one. At the end I was pleasantly surprised how well she had done. The speechy said to me, Veronika wouldn't of got them all right by chance, she was looking at them both and then choosing the right one. Then she did another lot, and she did pretty well with them too. Then she held up 3 cards at a time, but that just confused her. I was so proud of how well she had done. I really had no idea that Veronika would even be capable of that.....it just gave me the friendly reminder that i obviously needed to never under estimate what Veronika is capable of.

Last week we had our last Session at Early Childhood Intervention Services(ECIS), Veronika's school, for the year. We had a little Christmas party. It was bitter sweet, as I am going to miss seeing Veronika's friends every week, and their Mums, Dads, carers and Grandparents(there are a couple of Grandma's raising their grandchildren, they really inspire me). The other reason is that next year Veronika will be in the transition to school group. Meaning the following year she will be in kinder! One of the teachers was telling us a little about what to expect for next year, and I had to ask, will there be a part of the program that focuses on helping the parents to cope with the idea that their baby will be going to school. I know that Veronika will most likely be ready, but I know that I won't be!

This is Veronika, on our way back to town after ECIS, with her bag of artwork from the year. She was so excited and waved, and blew a kiss to everyone we passed!

And just a couple of happy snaps from recently...

 Jordan(my eldest) reading to Veronika.

Veronika showing her top that Carmen from Oscar and Raban make her. It has a possum on the front and the Hoodie is a long curly possums tail.

Afternoon tea with Ms Quentin Bryce....

A couple of weeks ago, we were invited to afternoon tea with the Governor General of Australia, Ms Quentin Bryce. What a fabulous afternoon we had. Quentin Bryce is just wonderful. Veronika and I had a lovely chat with her. She asked me lots of questions about my journey with Veronika, and asked if I had other children(yes I do, Jordan 9 and Jakob 6).

Veronika and I, with Ms Bryce and Gina(a friend of mine we met thru ECIS this year)

I guess on reflection, if I didn't have Veronika, this is something I never would of had the opportunity to do. Met and have afternoon tea with the Governor General. What a privilege to be in company with possibly the most elegant lady in Australia.  A lady who, to me was genuinely interested about my journey with Veronika. A lady who congratulated me on the job I was doing, helping Veronika on her journey to health and mobility......a conversation I don't think I will ever forget.

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!