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Aleyah

AleyahAleyah was born at 36 weeks on the 28th September 2005.

At 34 weeks the Dr’s noticed that Aleyah had stopped growing and were a little concerned that the placenta was not doing its job, I was told to eat as much as I could and as frequently as I could for the next two weeks, I ate until I felt I was going to burst, but this didn’t make a difference, a week later Aleyah was still measuring at 34 weeks. The Dr’s were now contemplating inducing labour something which I was not too keen on, neither was Aleyah. At 36 weeks and a few days before we were to be induced Aleyah decided it was time to make her way in to the world.

She weighed 2kg and was very much a quiet baby, they took her away for routine checks and 20 minutes later she was brought back in and I held her for a few minutes, she looked so peaceful and beautiful and tiny.

Unfortunately for me I had to go in to theatre as the placenta needed to be manually removed and Aleyah was taken to the special care nursery where they placed her in an incubator and fed her through a feeding tube.

My stay at the hospital was over and it felt strange to have had a baby and be returning home without her. Every day I would go in and bond with my baby girl, it was really tough not being able to hold her, when I did get the chance I didn’t want to put her back in the incubator!

During her time in Special Care she lost some weight, was jaundiced and struggled to breast feed. Her dad was reluctant to hold her because she was so small, but when Rob did hold Aleyah, she sat perfectly in one hand!

AleyahTwo and a half weeks had gone past and Aleyah weighed almost 2.4kg, it was time to take her home!

Aleyah was developing like a normal baby, she was making her milestones and everything was going well, however at 14 months she was making no effort to stand up, she bottom shuffled everywhere and never really crawled, we thought that maybe because she was born small that it would take her a bit longer to start standing up, which she did at 16 months but on tip toes, so we took her to the Paediatrician.

The Paediatrician mentioned that it could be a mild form of Cerebral Palsy and would require an MRI to make the diagnosis. There was a waiting list, and the days waiting were spent worrying and contemplating the ‘what ifs’. We were told that she might not walk and could be in a wheel chair; this was something that I refused to believe or would allow to happen.

Aleyah had to be put under anaesthetic for the MRI. When the results came back we were told that there were no signs of white matter in the brain, but still labelled her delay as a mild form of Cerebral Palsy. Typical Doctors always needing to label!

We were given the options of getting Botox injected in her legs to decrease her muscle tone, and for us this was not something we were willing to put her through. There were discussion of Physio and Early Intervention. The Paediatrician was more interested in talking about Aleyah’s delay more so than taking action. I chose not to return to the Paediatrician and had a chat with my Maternal Child Health Nurse and straight away she handed out details of an early intervention centre. We took that first step which provided us with hope and determination to get Aleyah walking. We were advised to make sure Aleyah attended Physio once a week, as well as massaging her legs every hour .We would have an intervention specialist come and assess Aleyah in our home and we applied for a grant to purchase Aleyah’s AFO (Ankle Foot Orthotic) which basically stretched her legs consistently from morning to night, and only take them off before bed.

Five months passed with the same routine, we would take her swimming, use anything we could find to get her to try and climb up, and we even piled up cushions. Being creative and trying to find ways of inspiring Aleyah to want to make progress was a challenge, we even purchased a trike and sat her in it with her feet on the pedal and we would push her around so that her brain would connect with the physical movement and give her that extra activity and stimulation.

Time was essential and every day counted in making a difference.

Aleyah could now stand up with her feet flat on the ground, no more tip toes! She still used her AFO’s and walking Aid (which was like a trolley to support her from the back).

The first time she took a step unaided was amazing, we had been hoping and praying for this moment, with tears of joy all round, we could now start to see a brighter future for our girl. One step turned in to two, three, four and she was well on her way!

We were amazed with how far Aleyah had come in those six months. No one could tell us when or if she would ever walk, and to finally see it happen was incredible, we held on to hope as a family and did everything we could to give our baby girl the best chance to live a healthy and normal life.

Four and a half years on Aleyah is at school and loves running around, swimming and enjoys playing basketball. Her dad has taken her to the Dandenong Ranges to tackle the 1,000 steps of the Kokoda Walk –twice! Who would have thought huh?

From this experience I put together Mini Shooting Stars, a basketball training program to give children aged 3-6 of all abilities the opportunity to partake in a mainstream sport as I believe every child has potential and we should not limit them, as parents we should inspire our children and give them the opportunity to thrive on their strengths and build on their weaknesses.

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