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’.

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.