STEP BY STEP

Ocean Stephen is back from the US af­ter life-chang­ing surgery

Waihi Leader - - Front Page - By CAR­MEN HALL news@wai­hileader.co.nz

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.

PHOTO / CAR­MEN HALL

Ocean Stephen has re­cov­ered well af­ter surgery in Mis­souri and was learn­ing to walk again.

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