I Fight CP- Guest Blogger – Mona Saliba

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 This woman is amazeballs and I am beyond excited to have her on the blog today. I get goosebumps when I read this story. The power of a mother/ parent is just incredible and Mona to me is an absolute legend. And look at her beautiful girls!! Heart melt indeed!
I tip my invisable hat ( yes I wear one..) to Mona and every other amazing parent out there who fights for their kids with all their heart and doesn’t let anything stop them! To me you guys are the hero’s in our community!  Ok here is Mona…….
So just a few things about me… I’m a mum of two. Lauren 9 and Grace 23months. I’m currently on extended maternity leave and I’m helping my husband with his new business. He does plantation shutters, blinds etc and we work from our home office.
My Instagram page is devoted to Lauren and trying to raise Cerebral Palsy Awareness as it’s not talked about or in the media as much as it should be.

So here’s my life in a nutshell. Hope you enjoy..

Lauren was born at 41 weeks after having a text book pregnancy and a reasonably uncomplicated birth via a assisted vacuum delivery.
She was a small baby, weighing 2.8kg but there was no indication of anything being out of the ordinary other than failing the SWISH hearing test they do at the hospital. Her left ear was good but her right ear failed the test – we later learned that she was near completely deaf in that ear. We were devastated! Looking back on that now my husband and I laugh and say “I wish that’s all it was”

When Lauren hit 6 months of age I’d noticed that she wasn’t doing things like the other kids her age – bearing weight on her legs, rolling, sitting up etc I took her to the GP and was told she’s still little give her time, I was probably seen as a first time mum that worried too much but I was convinced it was something more. Some more months passed and she still wasn’t reaching her milestones. I took her back at 9 months and the GP referred us to the paediatrician that was assigned to us at the hospital.
After seeing the paediatrician and he assessed her, he confirmed that she had low muscle tone and to seek physiotherapy for her and there was most likely something wrong with her hips. I had also explained to him that her right hand would stay flexed and clenched and her right leg was rigid also and it was difficult to straighten. He then suggested that an MRI should be done and an X-ray of the hips were needed. Hearing that confirmed my worries. We did the X-ray on the same day and it showed she had Hip Dysplasia of both hips. It would be months though before an MRI could be done. The Children’s Hospital had a 6 month wait list so I called every hospital in Sydney to try and fit her in sooner. It had to be done at a hospital because she’d have to be placed under GA.  The Nepeon Hospital said they could do it within 3 months so we did. Lauren was 12 months old by this stage and the whole thing was so distressing.

The results were back within a couple of weeks and I took them to the paediatrician for him to translate them.
He stammered and umm’ed a bit and then delivered the news. Lauren had Right Sided Hemiplegia Cerebral Palsy.
Calling my husband to give him the news was harder I think.

So it began…. Specialist doctors, physiotherapy, speech therapy, hydrotherapy, occupational therapy, clinic appointments the works! I took 3.5years off work so that I could devote my time to Lauren. Everything went on hold including having more children.

Fast forward to today and Lauren is a fragile but strong, soft but resilient 9 year old. She started walking with the aid of her ‘walkie’ (walking frame) and AFO’s. She ditched her walkie and started to walk independently at age 4 against the odds and against what the doctors told me.

We’re on a wait list (15 months) to have feet stabilisation surgery and Lauren also has scoliosis that she’ll need surgery for too shortly after that. She wears a spinal brace for 22hrs a day that helps with pain and straightens her up. Her hips were treated with a Dennis brown brace for a couple of years and it’s helped so no hip surgery at this stage but they will continue to monitor them.

In 2014 Lauren had surgery on her eyes to tighten the muscles to keep her eyes from turning and that went well thank God. Also in 2014 we welcomed Grace in to our world. Lauren was so excited to finally have a sibling and I was even more excited it was a girl. A sister for Lauren!

We are currently on the wait list to see an Occupational Therapist so that Lauren can get her first wheelchair. It’ll be a lightweight manual chair for days out where lots of walking is involved. At the moment Lauren struggles to walk more than 20mins without fatiguing and feeling pain so hopefully she adapts well to it. Hopefully I adapt well to it. I understand it’s a means to an end but it’s still a very daunting thing.

Our focus right now is to get Lauren as fit as possible and build her muscle tone in preparation for her impending surgeries. I’m also trying to make her understand her CP and learn about it and to be aware of it. It’s still in the early stages and Lauren doesn’t seem to like to talk about it just yet. For now (and always) I’m her voice and her biggest advocate but I know one day she’ll grab this thing by the horns and show it who’s boss. She will rise to the challenges and reach beyond expectations as she’s done all her life. She’ll stand tall and proud and she’ll do big things in life but above all she’ll continue to make me the proudest mum ever. My Lauren is special and her abilities will continue to amaze now and forever xx #ifightCPwhatsyoursuperpower 💚

@ifightcp
Mona Saliba

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