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’.

Saturday, December 17, 2011

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.



Saturday, December 3, 2011

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.......

Sunday, November 20, 2011

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....


Thursday, November 10, 2011

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

video


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!


Saturday, October 29, 2011

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?



Wednesday, October 19, 2011

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......

Monday, October 10, 2011

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...


Tuesday, September 20, 2011

I must be the Proudest Mummy, just about now…..

Veronika’s Physio set me a bit of a challenge. She wanted her to start to ‘cruise’ on the furniture, before we can talk about walking frames. Well that was just under a month ago. So we have been working really hard at home, 1st getting Veronika into a standing position. She just wants to climb on everything. Which don’t get me wrong, I love that she can climb onto the couch, and onto the blanket box etc, but when you are trying to teach a 3-year-old to stand, I mean stand still, not pull to stand, then up on the couch. So I have been working really hard, at getting her right foot under her, to stand up, and stand still, with her feet in a good position. Then to keep her entertained while she is standing there. We have done LOTS of puzzles during this time, and each time I would get Veronika to pass the Puzzle pieces to me, as we(I) talked about what the puzzle was about. Then I tried very patiently to get her feet moving across to get the puzzle pieces….click below to see the result.


veronika cruising for chocolate 149

and I think right about now I am the proudest I have ever been. Veronika continues to inspire me, she really is my Hero. Her determination is amazing. Her resilience to try, try again is never-ending. And hopefully that doesn’t change over time.

Veronika continues to learn new signs, and last week she mastered ‘love’. She signed ‘love’ followed by ‘Mummy’….I then asked her who else she loved, and she signed ‘W’(Willow) her best friend. Was just too cute. I find it absolutely amazing how much information Veronika seems to process. I was telling her speech therapist a couple of weeks ago, how at the dinner table one night, I was talking to her, and asking her questions. I could see her deep in thought processing the information, before she signed her answer. I can’t for the life of me remember what it was actually about, all I can remember is just thinking how much Veronika seems to understand.

Veronika is also excited to tell you that she will be an Ambassador for St Giles Walk With Me Hobart, on October 16th. We are looking forward to raising awareness for people living with a disAbility in our community. I was thrilled when Veronika was asked to be an Ambassador, and naturally yes was the answer.
Veronika and Willow have joined forces, and would like to extend a warm welcome to everyone to come and Walk With the SuperGirls…..

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


I have more to tell, but I also need to get some rest….so maybe next blog…

Tuesday, September 6, 2011

'Bouncing'

One night last week we had satay chicken for tea, and the boys wanted popadums with it. I placed to bowl of them in the middle of the table and next thing Veronika was eating one. I have offered them to her before, but she has never eaten it. She loved it, and she had 2 more. I was so surprised that she was actually eating something, made a nice change. But of course it didn’t mean that she would eat tea the next night, or the night after that, or even the night after that!

Veronika continues to learn new signs. Her favourite at the moment is ‘bouncing’. Veronika loves to go on the trampoline. She sits at the sliding door, points outside and signs ‘bouncing’. Click below to see Veronika signing ‘bouncing’
video




After Veronika had been on the trampoline for 30 minutes yesterday, I continued to ask her if she had finished….and she kept shaking her head to say no, then she would sign 'more'....'bouncing'(wont let me upload another video at the moment, so will try again tomorrow)




We saw Veronika’s new Physio last week. We are continuing to work Veronika really hard on standing independently, and trying to teach her to ‘cruise’. She does a little of this in the hydrotherapy pool at St Giles, but on dry land, this is a really difficult skill for Veronika. In the hydrotherapy pool her body is supported by the water, it helps to balance her. She still can’t stand independently in the water, I dream about the day she will be able to, so I don’t have to hold her the whole time we are in the water. I find I need a few extra hands when she is in the water to get her working really hard, as there is so much to do. Keep her feet on the floor for a start, balance her around her hips, without too much support so she is doing the work herself, put the toys just out of reach so she has to move to get to them etc…..If we can get Veronika to start to ‘cruise’ on the furniture at home then we can possibly look at getting her into a walking frame, but 1st she needs to have the strength in her legs, and her left arm(the side with Cerebral Palsy) to support herself

Jordan, my 9-year-old had a friend over today to play, being school holidays. His Mum and I had the chance to have a chat, in between 4 boys aged between 6-9 running in and out. She was saying she is amazed at how well I cope with Veronika’s extra needs. I was trying to explain to her that it’s really not that hard. I know for a fact that Veronika shouldnt of survived her birth, and that I would rather have her than not have her. I find Veronika an absolute delight, she is so easy-going. Most of the day she is happy and content. It’s really hard to explain, but Veronika has taught me so much, not just about her, but about myself…..and I love my 3 kids to the moon and back, and would do anything for them. And if that means taking Veronika to 4-5 Doctors/allied health appointments each and every week, then spending countless hours on top of that at home doing physio, then I will, because Early Intervention will give Veronika the best chance to maximise her potential.

Veronika is a cheeky little girl too, she continually makes me laugh.This afternoon during her therapy session at home, we were doing her shape puzzle. She was deliberately putting pieces in the wrong place(square in rectangle, circle in square) and then she would crack up laughing and clapping. Was SO cute, and yes I didn’t video it, as I was keeping her balanced as this was a ‘standing at her little table exercise’.

Monday, August 29, 2011

My 1st Time at Public Speaking...

I survived.....my 1st attempt at public speaking about my journey with Veronika, and specifically my MumSense(intuition). Well at least I think I survived......

I presented at the Mother's of Preschoolers(MOPS) leaders conference on Friday night. This is where the theme for MOPS 2012 was revealed. MumSense
Mum Intuition + Common Sense = MumSense
This has been broken into 3 parts, and I was sharing about Discovering My MumSense. It was challenging, and yes I was emotional at the beginning, as I was about to share some personal "stuff". But then i remembered to Breath, and off I went.

Throughout my last pregnancy with my daughter, I always had a feeling somethings wasn’t “quite right”. I wasn’t really sure what, I just felt as if something wasn’t quite right.

April 28th 2008, the day my whole world changed.......

It wasn't long after this I looked around at the people listening to my journey, and wow, there were some tears. Yes my Mum always taught me that it isn't nice to make people cry, but in this instance it was different, I guess I knew at that point, what I was sharing was having an impact. 

At the same time I was also overcoming another fear....my fear of leaving Veronika over night and going up the other end of the state. I did of course have my back up safe plan, my just in case Veronika was to become sick and I needed to get home fast. I declined the offer to get a ride up there with someone else, just in case I needed to get home. I didn't need to dash home. So YEAH for me! And the bonus of this all was that I got to drive from one end of the state to the other all by myself and  I had on the music I wanted to listen too!

Yesterday I overcame another fear. The fear of taking Veronika to a public pool, that isn't heated as much as she is used to. We haven't taken her to a public pool for a while, as she tends to go blue quite fast. So after talking with one of the pool staff at the rehab pool we go to, I decided that Veronika would be wearing a wetsuit in the water. So when we got there, I explained to them that Veronika has multiple disabilities including a congenital heart defect and that she would be wearing a wetsuit in the water, to help her not go blue as fast. The lady looked at me, and she said that was fine, and just make sure I let the life guard know. Well that was a lot easier than i thought!

For something completely different, Veronika has learnt to sign 'good'. When we went to the rehab pool last week that we go to every week, Kathy who works there, asked her "how are you today girlfriend"(the question she asks her every time we go), and Veronika signed 'good' without any prompting. She had never signed it before, and its so cute how she does. It's just the basic 'thumb up, with closed fist', but the smile on her face while she signs she is good is just priceless.
 

Wednesday, August 24, 2011

Planning for the next 6 months......

What a buzz.....today at ECIS on of Veronika's friends who has just started WALKING.....came in the door and stood next to me as I was pushing Veronika on the swing. She had her arms outstretched after a hug. It was one of those moments, life suddenly pauses for a few moments, to take it in....this adorable little girl, had walked all the way from the car, and was so excited to be at school with her friends. It wasn't just that she WALKED, it was more than that, the joy on her face, still brings a tear to my eye just thinking about the moment. She gave me the biggest hug, and for a brief moment the world stopped, around me.....maybe that's because deep down I cant wait for that day that Veronika will be strong enough to walk....she has already mastered the art of getting a hug.

My week is only going to get more exciting from here. Friday I am off to speak at a conference on my journey with Veronika. About finding my MumSense. I am really excited to be able to share some of my journey over the last 3 and a bit years, but at the same time, a little nervous. It's not the speaking in front of a room full of people, its more about sharing some pretty personal "stuff". I will have to let you know how i get on!

Veronika is recovering from her latest UTI. She bounces back so fast which is amazing really. Tomorrow we have a planning meeting with her Physio, Occupational Therapist, hopefully her teacher from ECIS is she can make it in between appointments, and the social worker. We will be looking at the goals we set at the last meeting(which was maybe late last year). I am really excited about this planning meeting as Veronika has reached some of those goals, the 2 biggest holding her own bottle and crawling. It will be interesting what her therapists have their minds for Veronika's goals for the next 6 months too.

Stay tuned for the goals.....

Wednesday, August 17, 2011

Catching up on what Veronika has been up to...

Well yes I know I have been a little less frequent with my blog lately. 
So here goes more of a visual blog....


These were taken in July. We have a fence across the kitchen so 
Veronika cant get under my feet while I am cooking.
I just love these 2 photos of Veronika

We went to the Playschool Concert in July, thanks to our MyTime Group.
Veronika loved the show, but she did however find it hard to see at times, as all the children were standing and because Veronika can't really stand up, she tired really fast. She loved the Music, and at the end she went over and sat on the edge of the stage and was signing 'more'.

10th August 2011
This was taken at ECIS, or Veronika's School as we call it.
 Veronika was standing as best she could with the table supporting her.

 and when that got too much, she just climbed up onto the table to play!

 Cruising in the little purple car. Today was the 1st day Veronika managed to go forward in the car. She has been speeding backwards for a while, but was so excited when she figured out she could go forwards.
 Veronika usually heads straight for the stairs as soon as we get to ECIS. I think she would over them all session long if I let her.....
A few months ago, Veronika figured out how to crawl thru the tunnel, 
but this day she decided just to hang out instead.

Veronika got her iPad holder also on the 10th August 2011. Tascare Society for Children, 
introduced us to TADTAS, who make the Freedom Wheels bikes, to see if they would be able to modify Veronika's pram to hold her iPad. This is going to save me holding it for her when we are waiting for her Doctors appointments. As you can see Veronika was very excited!

And for another proud Mummy moment....This is my oldest son Jordan.
He recently went in the Computer Skills Competition, and he got a Distinction and
was in the top 2% of participants in Grade 3 for Tasmania.


Monday, August 8, 2011

Girly Girl!!!

Last week I finally got time to actually do something for myself.....I had my hair done! Veronika was booked in for a trim too. Off to the hairdressers we went.....Veronika was paying close attention as Jamie was putting the foils in my hair. Then when it came time for her hair cut, Jamie gave Veronika a piece of foil to hold, she immediately started putting it on her head. Jamie asked her if she wanted it in her hair and she nodded. He told her as soon as he finished cutting her hair, he would put it into her hair. Veronika was so excited when Jamie put the piece of foil in her hair, and smiled the biggest smile, and clapped.



Another proud note, was driving along today. Veronika was in the back.....listening to her CD. When we got up to Glump went the little green frog song, and she started signing Frog....so cute.

Wednesday, August 3, 2011

Australian Paediatrician Exams!

Well it's Thursday already. This morning I am treating myself and having the morning at home....playgroup can wait to next week. Before I am off to an afternoon appointment and then swimming lessons for my boys Jordan who turned 9 last week, and Jakob 6.

The weeks are passing by so fast. Veronika is keeping me busy as ever. Last week she was a long case study for the Australian Paediatrician Exams. We have been asked to participate for 3 years, and is something that I really like to do. I kind of feel as if it's a way that Veronika and I can give back to the hospital that we have spent so much time in. We have also been asked many times too if Veronika can be used in a practice exam, to which the answer is yes. I sometimes wonder if Veronika's file has a red mark on it or something as quite often when we are at the hospital for an outpatients appointment we often seem to have people come ask if they can do a practice exam on her. When Veronika was there in May for her MRI and hearing test we had 2 Doctors come find us!

Last week while we were waiting to get started Veronika kept crawling over and sitting in the door way, and said the usual 'ayyy' to everyone that walked past, and when they looked at her she would smile and blow them a kiss. When her Paediatrician that we see for Veronika walked past, she stopped and said, 'Veronikas in fine form today, stopping everyone on their way past.' For those of you that know Veronika I know you will be picturing exactly what she was doing!

Last week we also registered for the Better Start Program. I was really surprised when the package turned up in the post Monday morning to say Veronika was now registered. Didn't think it would be that quick or that easy! We have a planning meeting booked later this month with Veronika's Physio, Occupational Therapist, Social Worker and hopefully her teacher from Early Learning. I am hoping that way we can get some plan together as to how best to allocate this funding to maximise the benefit for Veronika

I am off now to do some messy play with my Veronika....

Sunday, July 24, 2011

Girls Weekend Away....

This weekend I had my 1st weekend "off" since Veronika was born. Tania from my mothers group from when Jordan was a baby(who will be celebrating his 9th birthday on Tuesday) invited me to her parents shack at Orford. We try to go once a year for a girls scrap booking weekend. We have been trying to get away since last year when I couldn't go as Veronika was sick in Hospital. I went up Friday night after an early tea, and came home this afternoon. Saying it was great to get away is an understatement! It was so quite. The shack is by the beach, so watching the waves crashing on the beach, and listening to them while going to sleep brought back childhood memories of growing up in Lauderdale, listening to the waves of a night.

I managed to get more scrapbook pages completed than I thought I would, which is always a bonus! I was working on some of Veronika's album, from just after her 1st Birthday to when she was around 20 months old. WOW has she grown. She was a little baby for a 39 week baby at 5lb 15oz. I still laugh when I think about how on her 1st Birthday I put away all her '000' clothes, and on her 2nd Birthday I put away all her '0' clothes. Looking back at the photos and the things she was doing to where she is today is just amazing. I remember talking with her Physio probably would of been around 3-4 months ago, about how everything "is just so slow". I know learning new skills for Veronika is such a challenge, but over the last 8-9 months Veronika has just amazed me. She has progressed and met some pretty big milestones, one of which we thought she would never ever do, to crawl properly. Up on all 4's. I guess that's one of the reasons that I love to scrapbook, brings back the memories.....yes the good memories, and the lets call them challenging times too, the ones that make us stronger.

However all good things come to an end as they say, and tomorrow we are back to the usual....so we are off to meet Veronika's new Physio, and the head Physio at St Giles and also we will be seeing her Occupational Therapist. Will be really interesting to see what her new Physio has to say....and see what her goals are for Veronika over the 6 months Veronika will be in her care, until her original Physio is back from long service leave. Wednesday we have Early Learning and after that we are off to Carers Tasmania to register Veronika for the Better Start Package. Thursday is a day I am surprisingly looking forward to. I was asked a couple of months ago if Veronika could be a long case study for the Australian Paediatrician Exams. We have done this the last 2 years and I always find it really interesting to see what questions they ask. As one physio said to me after last years exams, "I would love to be a fly on the wall in there, as they would come in and look at Veronika and think this will be easy, a little girl with Down Syndrome" but when then get started and realized there is more, actually much more to Veronika than her primary diagnosis you can see them get frazzled. But realistically that's what its going to be like when they complete there studies.....

Just thought of another story to tell you. Last year when Veronika became really unwell and my GP took one look at her and called an ambulance, which got there really quick(our GP is in North Hobart). By the time we got to hospital Veronika was in severe respiratory distress and had a temperature of around 39.6 from memory. We were taken straight to resus where the Doctor was waiting to assess her. He asked for a fast medical history, while he was looking over her.....as he was listening to her chest he lost the colour in his face and asked if there was any other medical information I had forgotten to tell him.....ooppps sorry Veronika has an ASD(Atrial Septal Defect, her hole in her heart that was 19mm, so that's pretty big!).....the colour returned to his face as he said to me he was glad that I knew about that as he didn't want to have to tell me that he heard a severe heart defect, especially when she was so unwell......wasn't long after that they were drilling into her shin bone without an anaesethetic to get some fluids into her, as all her veins had collapsed. Something I never ever want to watch any child go through....it was horrific. It was actuall the 1st time since she was born that I actually thought we were going to loose her....

Anyway on a happier note Veronika is smashing it at the moment. She is getting stronger all the time. Her endurance has improved so much that she isn't having a day sleep everday anymore. She is standing up at the couch straighter, instead of slouching forward. However I still am struggling getting her to keep her shoes and her foot orthotics on. She has figured out how to take her AFO off(her big foot orthotic on her left foot), something I will be discussing with the Physio tomorrow no doubt. Veronika is also signing more, and putting more signs together. A couple of weeks ago, we went into my work for a drink. Veronika ordered her usual, 'coffee' and a 'biscuit', (babycino and date scone). We were sharing the scone, when I went to eat some she signed "STOP" followed by "eating".....then proceded to sign "more". So yes I was compliant and stopped eating, and gave the rest to her, and the following day I was telling her teacher at ECIS that Veronika is now signing in sentences.

Saturday, July 16, 2011

Veronika's Journey Back to Health.....

Well it's been a while between posts. Life has been hectic as usual. Its been 4 weeks since Veronika became very unwell and had 5 days in hospital, and now 4 weeks later Veronika has returned to health. She is back to her cheeky self, drinking well, and eating. She isn't eating a lot, but she never really does anyway, this is a ongoing battle! I still continue to be amazed daily at Veronika's determination...she rocks my world. Respiratory infections always take their toll on her little body, she lost a kilo over the week she was really unwell, she really didn't have a kilo to loose, so its been an uphill battle to get her back to health, but we are getting there slowly. A week after coming home we were back at our GP to get a script for antibiotics as she wasn't getting any better and her chest was becoming more "rattly". So 10 days of antibiotics later she was starting to improve and another week later we are there.

It has been a kind of surreal journey since Veronika's hospital admission. When I am asked why she was in hospital the answer is "just pneumonia". I usually get a shocked reaction from people, "what do you mean just pneumonia". I guess thinking back to when I was growing up, I always remember pneumonia as being a really serious medical condition, yes I know it was then and yes it is today. But I guess there are so many other people out there going thru much worse medical "conditions". Yes I was really worried as she deteriorated so fast as she does, but the Doctors in Emergency are great. I still have a little chuckle when I think about when we were taken into resus from the back of the ambulance, and the Doctor that was on, got a quick medical history from me as he was assessing Veronika. She was obviously dehydrated, and when he asked "how do we usually rehydrate Veronika, with a NG tube or a drip?" and my answer was "last time you did an IO"(when they drill straight into the shin bone to put the drip into the marrow in the bone, and yes there is no time for an anaesthetic, not something I ever want my daughter to go through again), he quickly looked for veins to get a drip in ASAP as they obviously didn't want to have to do an IO again.

But once Veronika was stable, she was re hydrated, it was just a matter of waiting for the respiratory infection to clear enough so she could drink and eat again. I guess the amount of time I have spent in hospital with Veronika since her birth, I have seen and talked to a lot of parents that have really significant battles to help their children fight. Yes Veronika does have severe multiple disabilities, but at the end of the day, they aren't terminal. Yes her life expectancy is reduced because of her disabilities, but she still has to opportunity to live a long, happy life(at least this is what I pray for).

Veronika has taught me so much over the last 3+ years. I still remember the day like it was yesterday, that my Obstetrician noticed the bleed in her brain. He had no idea at that point what caused it(still we don't know), or what it would mean for her down the track, or even if she would survive her birth. BUT she did, and I Thank God she did.

I was talking with a close friend this week about remember how you always used to say "I cant remember what I used to do with all my time before I had children". Something that I think every parent says at some point. Well I have changed that to "I cant remember what I used to do with all my time before I had a child with extra needs" I wouldn't change Veronika for the world. She continues to teach me things about myself all the time.....and for that I am grateful.

Saturday, June 25, 2011

Veronika's trip to Hospital.....

I still am trying to catch up on the sleep i missed out on for the 4 nights that Veronika was in hospital.....I think sleep must be over rated as I don't ever seem to get enough sleep! I guess that it didn't help that I realized after being there for 3 days that I hadn't had my medication to treat my over active thyroid(Graves Disease). I had a massive flare up about 6 weeks ago, and have been on a high dose of meds since.....but YES it does help when I remember to take my tablets!


This is Veronika in Emergency, temp over 39oCelcius

The 1st night Veronika was in hospital her temperature was really high most of the night.....it maxed out at 39.6 degrees, but as I said in my last post I think it was, the only really blessing from that is she was so lethargic that she dozed most of the night. Sunday night she flat out refused to sleep in the cot, so we snuggled on the recliner as best you can! Every time she got back into a deep sleep I would just get her settled into the cot, when the night nurse came in to to her hourly obs, and shine her torch in her face and wake her up!!!!! Angela, who's daughter was in the bed opposite Veronika's, told me the following morning she was about to tell the nurse to turn her torch off for me!

Monday night was the worst night we had in there. Veronika went into respiratory distress again, late in the afternoon, and was breathing at 2-3 times her normal rate most of the afternoon, and was 'sucking in' her chest, and in her neck, and was doing a bit of the 'grunting thing'. Those of you who have had a child in respiratory distress know what I mean by the grunting thing....its kind of like they hold their breath and then grunt as they breath out. A Doctor once explained it to me that its kind of like the body's own CPAC. I was once told off for driving Veronika into hospital when she was like that, I was questioned why I didn't call an ambulance, because what was I going to do if she stopped breathing....I hadn't thought of that, and I explained to the Dr that I didn't want to be one of those people who waste resources, to which I was assured that I wasn't! So the nurse called the Doctor to come look at Veronika again around 9pm ish I think, and she called the Paed Registrar to come look at her. She was in an emergency and came in about 1am, and then they checked Veronika every hour, including basically stripping her off to look/listen to her chest, roll her over and listen to the back too! Was a very long night as I was worried about her. Its just not nice at all, when she struggles so much.

The other thing that the respiratory distress meant was there was no chance of letting us go home Tuesday. If it was just feeding, then I think I could of been in with a chance of talking them into putting a NG tube in, and I would take her home and tube feed. But when its respiratory, I was fresh out of luck. We tried often to get Veronika to drink Tuesday. She still wasn't at all interested, and I think she managed about 130mls for the day total. The drip had been turned off after Doctors rounds in the morning, in the hope she would get thirsty.....but even if she was thirsty, she still wouldn't even put her bottle in her mouth. She refused to eat, which she doesn't usually eat much anyway, but we tried everything the nurses could find, like 2 sorts of jelly, custard, soup, chips, yogurt. Things that she usually wouldn't have because of her intolerance's! But we tried.

Tuesday night was another "I don't want to sleep in the cot, and you can't make me night". Wednesday morning Veronika drank 100mls and then had a bath. We were getting ready to give her another drink when the Dr's came to do their rounds, and asked if I wanted to take her home.....seriously I don't think he needed to ask me. I said if she didn't drink enough over Wednesday and Thursday then I would bring her back in Friday and they could put a bag of fluid into her.......

We had a quiet day home when we got home. Thursday Veronika had an appointment with her OT and Physio. I was going to cancel, but because Veronika had her drip in her left hand for almost 5 days, she had become extremely 'fisted' due to her hemiplegia(Cerebral Palsy). It was also going to be the last appointment we had with her Physio before she goes on long service leave to next year. Her OT was not overly concerned with Veronika's left hand. She didn't seem to resist too much when she un-fisted(is that even a word) it. We made another appointment to see her in a week and a half to see if we could get her back to where we were prior to Veronika becoming unwell. The Physio was impressed that Veronika was still crawling, and hadn't resorted to rolling again. Last year when Veronika had pneumonia every 4-5 weeks, we continuously went backwards in Veronika's milestones. So it's really positive that this time it hasn't happened to the same degree. It took until yesterday for Veronika to get the strength to climb up on the couch again, and she isn't moving as fast as she usually does, but I am sure it won't be long to we are back where we started.

. Their children were in the Paed ward too! When I caught up with where there children were health wise, really I have nothing to complain about. Yes Veronika was unwell, but what she had wasn't going to kill her, and when she gets back to full health she will be the same little girls she was before she became unwell. I made the best of the situation we were in, and chatted with friends, while Veronika was asleep, during the day.

I think the highlights of the week were when Veronika was being transferred from Resus in Emergency to the Paediatric end of Emergency, and she was blowing kisses to the Doctor and Nurses that had been looking after her. They said she was just adorable, and that she could come back any time, but at the same time they didn't want her to come back as that would mean that she would be unwell......and on Tuesday when Veronika was being wheeled through the hospital in the cot to have her Chest Xray and she was sitting up there waving to everyone she passed! Was soooo cute......

Wednesday, June 22, 2011

I should know better.....

Early last week I was talking with a friend and I made a terrible mistake, I said something that I should never have said, and yes I should know better..."I can't believe its June and Veronika hasn't been admitted to hospital this year". Thursday and Friday Veronika didn't seem herself, I couldn't put my finger on anything, she just didn't seem her usual happy easy going self.

Saturday morning she was the same. She wouldn't drink much and was really tired. So she had a sleep for an hour or so and when she woke her hands and feet were dark blue and cold. I wasn't overly concerned as this happens every month or so, but they aren't usually that blue. It took about an hour for them to come right, and they came back to normal colour for half an hour before they went blue again, and she started to go into respiratory distress and she broke out in a fever. So around 3pm I called the ambulance, and they took us for a trip to hospital. We were taken straight to resus where there was a Doctor waiting to see her. Within 5 mins of entering emergency she had a chest xray, and had cream put over her wrists to get a drip put in. Her temp was now just over 39. After she was stable we were taken to the Paed end of Emergency and from there Veronika was admitted to the Paed Ward after the Paed Reg had been down to see her.

When we got to the ward, as her chest Xray was clear, her urine speci that I took in with me(Yes I am one of those mothers that as soon as she begins to show signs that we might be needing a trip to hospital I get a sample if I can, but hey the Doctors really appreciate it) was clear, and they couldn't hear any creps or crackles in her lungs, the Doctor on the Ward, said it could be anything from maybe a viral thing to meningitis, worst case. She wasn't overly concerned that it was meningitis, as she was "too well to have meningitis".

Her temp maxed out at 39.6 during the night, i guess the only blessing about her being so unwell was that she was so lethargic that she dozed most of the night..

At some point during the night I reflected on Veronika's Journey thru the Emergency Dept, I do admit I shed a tear, not because it's awful seeing your child so unwell, she was being very well looked after, but because this was my 1st trip there since Karina my hospital buddy, passed away just over 2 months ago. In a weird way I was blessed Veronika had deteriorated so much, because she was seen straight away, which meant I didn't have to sit and wait in the waiting room without Karina.....I think about her every day, I love her and I miss her.

The Doctors didn't want to give Veronika IV antibiotics as there was no real indication there was an infection, and she has had so many antibiotics in her 3 years, we don't want her to have any if its not necessary.

On Sunday, I was given another reality check. I know to well that there is always someone worse off than us. Those closest to me really know what I mean. I guess people are always concerned about Veronika, which don't get me wrong, because I really appreciate every ones concern, care, thoughts and practical help. I had heard that one of Veronika's friends was also in hospital. A little girl that Veronika went to early intervention with when they were babies, and I often wondered why I hadn't seen them for a while. I didn't know why she was in hospital, but when I ran into her Mummy in the morning, well lets just say, there is always someone worse off that you. And if respiratory distress, and a raging temperature was all this Mummy had to watch her 3 year old go thru, was all she had to worry about, life would be easy. It kind of put everything back into perspective this week. Yes I was really concerned about Veronika and her health, and when she would be well enough to go home, but really I had nothing to worry about compared to this Mum, one of the most Positive, Amazing, Strong People I have met.....if you get the chance to read this, you will know if its you I am talking about. I start to get a little teary thinking about how Blessed I am that all I have to worry about is that Veronika has Down Syndrome, Cerebral Palsy and a Congenital Heart Defect.....on my journey with Veronika over the last 3 years I have met some of the most amazing people. People who take everything day by day. Jodie who's son Hamish has HPLH Syndrome, the worst heart condition you can have, and Vanessa who's son Toby was born 16 weeks early, and has severe apnoea's that require her to resuscitate him at least once a fortnight.

For now though I have had minimal sleep since Saturday, so I best be off to get some sleep or goodness knows what I will waffle on about next! I do however promise that I will tell you more about our time in hospital, but for now I just have to leave you with the quote of the week......from one of the Nurses after the Doctors did their rounds this morning......"It would of been a brave consultant(Paediatrician) that would of told you that Veronika had to stay another night".....yes it would of, and just as well he didn't say that, instead it was that we could go home.

Monday, June 13, 2011

I love school holidays

Another week has passed. The school holidays are flying by so fast. I am enjoying not getting up at 6am every day! I have been having a sleep in to around 7am and some days if Veronika isn't awake its 7:30, as she is usually the 1st of my 3 children to wake.

Jordan and Jakob had an "out of this world" time on Monday and Tuesday at the School Holiday program at Howrah Church of Christ, was Mission Impossible Out of Space Theme. Veronika and I had a lovely time running around doing jobs while they were there. But we did however get a chance to have a coffee with Selina, one of my MyTime Mummy Friends.

Thursday we went to see our Friends in New Norfolk. We were going to have a play and BBQ at the Stop and Go park(Tynwald Park) as the boys call it, but it had been raining all week so we went to Toni and Leigh's instead.

Then Friday, was work day. After work Veronika and I(with Jordan as well) went to see Veronika's Physio as she had Veronika's new Pram for her. Veronika loved Jordan pushing her around the St Giles reception while I was talking to her Physio. Lets just say there were squeals of delight from her. Veronika's Physio also told me the news that our next appointment on 23rd June will be the last one with her for quite a while. She is taking her long service over 6 months! I am really happy for her, as she works pretty dam hard. But at the same time I feel a bit sad, as she has been working with Veronika since she was about 9 weeks old. She knows where we have come from, and the amazing milestones she has reached. She has been through some really tough times supporting Veronika and I, the highs and the lows. I am of course Blessed that there have been so many more highs than lows. I know that we will be passed over to another great Physio, who would of course had the opportunity to review Veronika's file. And I also know that its always a benefit to see a new therapist, but still Veronika's Physio has a good idea of what makes me tick too, to get the best out of Veronika. It's a challenge I look forward to meeting someone new, and I am sure her Physio will be surprised when she comes back from her long service leave.

Saturday, I spent some of the morning with Mark, Charlie and Amber, Karina's Brother and his children, and Kaz(one of Karina's best friends) and her daughter as we said a final goodbye to Karina. We went for a walk along the Jordan River, a place that they loved to walk or ride to as a family. It was a lovely morning, emotional of course, but I know that we have a Beautiful Angel looking watching over us. It was heartbreaking when Charlie, who is 2, was telling me that "Mummy's Gone".  I said to him that Yes she was, but that I promised that as he grows up I will tell him and Amber(who is 1) all about Karina and the Beautiful person she was, how much she loved them and one of the Best Friends a person could have, and Kaz of course said she would too.

I didn't have as many appointments for Veronika this week, as I try not to in school holidays as it's hard on Jordan and Jakob. So there isn't a real lot to report back! However her crawling has improved so much, my little roller has not rolled for a week, which strangely I miss, but at the same time am so Happy that she is properly crawling, and getting faster and stronger every day.

Tuesday, June 7, 2011

MRI Results....

Well the results were extremely positive. On Veronika's 1st and 2nd MRI"s she had some nodules in  the ventricles. I was told they weren't really sure what they were, maybe it was left over residue from the stroke she suffered prior to her birth.....anyway They have disappeared....how amazing. Veronika's Paed obviously said that was really good. Now the main thing that showed up was the brain injury that she had as a result of the stroke, but we already knew about that, and we have been working on the resulting hemiplegia for a very long time.....and we will continue to!

I don't know if I have ever shared the next thought with you....but I believe Veronika is extremely lucky that she has Down Syndrome. Yes you did read that right.....I believe she is extremely lucky to have Down Syndrome. Bet you have never heard anyone say that before, and I guess you are wondering why.

Yes I will tell you why. Veronika suffers from severe Hypotonia(low muscle tone), which is extremely common in people with Down Syndrome. I have been told by a visiting Baby Neurologist(from Melbourne Children's Hospital) that Veronika is the floppiest baby she has seen in a long time. Normally i guess that wouldn't be something to get excited about. But with Veronika its different. Her brain injury is pretty severe, and really she should be super tight in her muscles down the left side of her body(her hemi plegia or Cerebral Palsy), and her arm and leg should be pretty much non use able.....BUT because Veronika has Down Syndrome and the resulting Hypotonia, her muscles aren't as tight as they should be....and she does have some limited function in her left arm and leg. This is another reason that I Believe she will walk.....because she has been blessed to have multiple severe dissabilities, but in a weird way they kind of help each other out. Don't get me wrong, her plethera of Doctors still don't know how to treat her, as the combination is rare, especially in someone as young as Veronika is....But I do believe she is Blessed to have Down Syndrome.....

I also talked with the Paed about Veronika not wanting to eat, and by not wanting to eat, I really mean not wanting to eat. I really am surprised that she has put weight on, I guess the only reason is because she is on a prescription formula. We discussed how that she hasn't eaten any more by eliminating completely wheat, gluten, dairy, eggs, soy and rice milk. So she thought maybe I should give her anything and everything to eat and see if she eats anymore....so I have given her a couple of thing she hadn't had for quite some time, and guess what, her skin flared up and she is now consistently waking thru the night and screaming the house down....I don't particularly want to put hydrocortisone cream on her skin every time it flares, and i most certainly don't want to be up with her every night while she is screaming the house down because she has a belly ache....will be an interesting appointment with the Dietitian in 2 weeks....


Oh and for those of you that I haven't seen recently, my Miss Veronika is crawling. Properly crawling, she started the day before her 3rd Birthday. Its sooooo very exciting, as she has to use her left side of her body. She is getting faster every day, and I haven't seen her roll in 3 days. She is of course pretty chuffed with herself too.....that reminds me I need to take some photos to share....

Wednesday, June 1, 2011

Fingers crossed for good results

Just a quick note to say we are off to see Veronika's Paediatrician tomorrow, and hopefully she will have the results from Veronika's Brain MRI from 2 weeks ago. We have been so busy the last 2 weeks that I haven't had time to even think about it....

Yesterday we went to see a Physio that specialises in hydrotherapy for adults(I saw her when I had my knee reconstructed and did antenatal classes with her with all 3 of my pregnancies). They did a morning tea fundraiser for Veronika Will Walk, and purchased Veronika a mat, neck ring, rubber duck, and swimming nappy for her to use when we get her Hydrotherapy pool at home. I thought that was just wonderful....and she insisted that we bring our bathers and have a swim while we were there too...

Sunday, May 29, 2011

Donations for the Auction....

Auction Hosted By Tori Hodgman....

Dream and Just Believe,
Digital Collection 1, $500 Voucher for Digital Collection 1


Virgin Blue Travel Voucher,
Value $400, donated by Millie and Friends.

Bruny Island Eco Tour
Gift Voucher 1 family (2 Adults and 3 children) 3 hour Wilderness cruise   Value $300


Rotor Lift City Scenic tour            
Gift Voucher for Helicopter Flight over Hobart for 4 people  Value $780


 Active Electronics                            
 22 inch LCD TV Value $399

  
Car Repairs Tasmania
10 adult Movie Vouchers  Value $110

Kids Birthday Party Catering
Including Cake and food(all home made) Value $250


Tilford      
Gift Voucher for a service            Value $150


Dream and Just Believe,
Digital Collection 1, $500 Voucher for Digital Collection 1

LeslieVale Landscape
Trine will be your slave for 5 hours(gardening, baby sitting, house work etc)       Value $ you decide


 Top Gun                                                 
 Warbird Tasmania Mission 2 : "The Nanchang Reconnaissance "  
Value $1400, Flight + Jacket + Cap
(RESERVE of $600)
  
We also had a silent auction....Thankyou to the following people/businesses for hampers
  • Tassie Sweet Temptations
  • Amcal Shoreline, Revlon Pack
  • Hobart Flashengeist
  • Island Berries
  • Araminta Musk  
  • Tania Granquist, Stampin' Up

Gift Vouchers
  • Tango Hair Salon x 2
  • Hudsons Coffee, Murray Street
  • Ghost Tours of Hobart and Battery Point
  • Jelila Designs
  • Kingborough Sports Centre, Kindergym Party
  • Paula Heald Massage
  • Anne Bradburn, Tahune Airwalk family pass
  • Solo Pizza and pasta
  • Wedding and special occasion makeup
Other Items
  • Colin Mundy, Huon Pine Mantle Clock
  • David O'Byrne, wine
  • Puzzle People, 3 puzzles
  • Spot on the fishing Connection, fishing rod and camping chairs
  • KT, Eskimo Joe Poster, signed
  • Wall Art By Eve
  • Tasmanian Fire Equipment, 2x home fire safety packs
  • Xtras Direct Shoreline, Necklace
Also thankyou to 
  • Mulberry Tree Shoreline Shopping Centre for Teddy Bear
  • Babylon, for Hat
  • Steve Lovegrove Photography for 10x$150 vouchers
  • 9/11 Shoreline for wine donation
  • Banjo's Shoreline for platters to feed the Entertainers 
  • Michelle Williams for wine
  • Down Syndrome Tasmania
And a special Mention to Peter Sibilant for making the Posters, Tickets and Veronika's website, www.veronikawillwalk.org We have had so many comments about how amazing the posters look. Dale thankyou for plastering Hobart with them.....