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 28^th 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.

 

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.....

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.

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.

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....

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.

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.