STEP BY STEP
Ocean Stephen is back from the US after life-changing surgery
It has taken some coaxing but Ocean Stephen is keen to show off her new skills. In the lounge surrounded by a makeshift castle, Barbie dolls and therapy equipment the three-year-old defiantly says she will walk with one walking stick not two.
If we are lucky she might stand up unaided but a bigger bribe of a small piece of chocolate may be needed to pull that off.
The feat is an emotional one for her mother Kristen Waite. She still chokes up talking about her daughter’s battle with spastic diplegia cerebral palsy and her recent operation in the United States and hopes the youngster won’t just walk unaided in the future — but run.
Curled up on a round cane lounger, Waite says the journey has been “exciting and scary all at once”.
She was humbled by the response from the Waihi community and strangers who helped raise $150,000 to give her little girl a chance at a normal life.
Tears form as she recounts the story of how Ocean was “perfect in every way” until she started trying to pull herself up as a baby.
“I noticed her toes were curling up and she was going up on tippy toes and her feet were turning inwards.”
At 14 months old, following advice from her Plunket nurse, her doctor suspected it was cerebral palsy and referred them to a paediatrician.
“It was pretty devastating because to be honest up until that point I didn’t think anything was wrong. And to hear she might never walk or talk was heartbreaking.
“I cried for a week.”
The single mum said it was hard to deal with but she was determined to find everything out about the disease.
The condition caused stiffness and spasticity in Ocean’s leg muscles, making walking and standing difficult and often painful.
Ocean could only stand and walk short distances using a walking frame or crawl along the floor before the surgery.
Described as a determined wee soul who had a strong will and loves to socialise, Kristen says she took the operation in her stride and had bounced back quickly.
The operation on July 30 in Missouri led by Dr Tae Sung Park involved opening up Ocean’s middle vertebrae in her spine so her nerves could be electronically tested to see which ones were sending the wrong message to her muscles. A percentage of the affected nerves were removed to stop the spasticity in her legs.
“It could not have gone more smoothly, it all went well and we were really lucky. Ocean did not freak out waking up with heaps of tubes and things attached to her. Obviously she wasn’t feeling too good when she woke up . . . but she recovered fast. They told us day two and day three would be bad but for us, it was day one, while two and three were fantastic.”
The team at the hospital was amazing and took incredible care of us every step of the way, she said.
Fast forward to Monday this week and Ocean is slightly cranky and tired after spending her first day back at kindy.
She is hungry and thirsty at the same time and wants a glass of water and apple. She also wants mum to find Kelly her doll and Pinky the family dog has taken off outside.
But Kristen was not bothered as she reflected on the journey so far and how an unimaginable dream was fast becoming a reality.
One day she will watch Ocean run.