My Little Project….

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’.

I guess at some point after maybe 2 weeks of crying, the later was the one I decided to make. Yes it had been a really hard journey up to that point. We knew Veronika had a massive stroke before she was born. Still don’t know what caused it to happen, and never will. Being told she might not survive her birth. Then when she was born being over joyed she was alive, having a quick cuddle, and then watching as she was taken off to NICU. Only to find out very soon after that, she had Down Syndrome. Then watching as she was taken for her 1st MRI at 1 week old, they didn’t need to sedate her to keep her still, she didn’t really wake up until she was about 2 weeks old….

YES MY PRINCESS WILL WALK. That thought passes my mind frequently. Our goal is that she will walk into her 1st day of kinder. A realistic goal, I believe so, and yes a lot the Doctors and Allied Health Professionals we see think it is a realistic goal. And believe me, she sees a lot of Doctors and Allied Health Professionals.

So what next.

I have decided that Veronika needs a hydrotherapy spa at home. WHY? Veronika has extremely low muscle tone all over. She also has times when she has high muscle tone down the left side of her body, a result of her brain injury/Cerebral Palsy. Now in a perfect world, you could be forgiven for thinking that if she has extremely low muscle tone, and high muscle tone down her left side of her body, shouldn’t that balance out and she should have ‘normal’ muscle tone. Well unfortunately the world isn’t perfect, so no that isn’t the case!
Hydrotherapy is a wonderful therapy for children who suffer low muscle tone, and for children with high muscle tone. Veronika is learning to stand in the pool, as the water supports her and makes this skill easier to achieve. IF she can stand in the pool, then we can start to work on getting her to move around on her feet in the pool, then eventually walking in the pool, as its much easier in the water, than on ‘dry land’. Veronika has an awesome team of Doctors and Allied health professionals looking after her:

• our family GP
• Paediatrician
• Physiotherapist
• Occupational therapist
• Speech therapist
• Allergy Clinic and Dietitian
• Brain Injury Rehabilitation Specialist
• Cardiologists
• Paediatric Cardiac Surgeon
• Baby Neurologist
• Eye Specialist
• Audiologist and ENT specialist
• Foot orthoptist
• as well as going to Early Intervention

So YES I am busy! We average 4 or 5 appointments a week, and as Veronika has low muscle tone she tires quickly and we cant go to hydrotherapy on days she sees the physiotherapist, occupational therapist or has early intervention. Thus we only manage to get to hydrotherapy once a week. And Yes ideally Veronika should be going a lot more often than once a week. So my little project is to fundraise so we can get her a hydro spa for at home. I have got a quote for a suitable spa, and yes they aren’t cheap! We are looking at $5500 for the spa, and then more for a concrete slab to put it on, as well as a fence to meet council safety requirements. SO where to start. I have managed to book in for a fundraising BBQ at K&D on March 6th. I am excited as I begin this challenge, I am giving myself 6 months to reach my target. Stay tuned to see how it goes!