Karen Coe

Kai's Story

Born unexpectedly early at 25 weeks along with his twin sister Eva, the risks were high at this stage (pre-term birth, low birth weight, multiple birth), but who knows - this may have been his fate despite this being the case.

See a lot is still unknown about how exactly CP occurs exactly. What is known is it is the result of some kind of abnormal development of part of the brain or by damage to parts of the brain. This damage can occur before, during, or shortly after birth.

Whilst in NICU, at two weeks old, weighing just 840 grams, Kai began having little seizures. This was an incredibly scary time, lots of tests and monitoring followed for the next month but at the end of that time no one could say with any certainty why they occurred or what the extend of the damage (if any) may be. We had to simply carry on not knowing. We did exactly that – and eventually after 5 months, we got to take our babies home. For the most part there were no ongoing concerns – he was behaving exactly like any other newborn should at that stage.

It wasn’t until several months later, when Kai was just past one year (corrected) old, that concerns started creeping in again about his development – he was slightly behind meeting some of his developmental milestones. Always a very active baby, he actually beat his sister to sit up, crawl and pull up… but he had trouble cruising and at this point muscle tone and tension was noted as abnormal. Many appointments, more tests and monitoring… and finally after what felt like an entirety, a diagnosis of CP.

The diagnosis is actually a blessing, because we can’t change what has happened, but the diagnosis allows us to get the right help he needs, and early intervention is hugely beneficial. This looks like:

·         Weekly physio appointments, as well as, home exercises to help strengthen his gross motor development.

·         Fortnightly occupational therapy appointments, as well as, home activities to strengthen his fine motor skills.

·         Fortnightly speech therapy appointments, as well as home activities to encourage language development.

·         More appointments for various clinics and specialist services to review his progress and needs, such as assistive technologies, medications, behavioural development, feeding support, sleeping support, plus more.

The Cerebral Palsy Alliance has hugely helped Kai and our family, we would effectively be lost without their support, guidance and specialty services.

Who I'm Walking For - Kai ❤