Faces of PKS
Cormac arrived into this world in June 2012, weighing a hefty 10lbs 1oz. My pregnancy had been difficult from a physical perspective as I had polyhydramnios. This had set off warning bells that something might be amiss but numerous scans and tests were carried out throughout the pregnancy and everything had come up clear. However, I always had a niggling feeling that everything didn’t match up. Cormac was whisked off to NICU straight after delivery and we were initially told that it was just fluid on the lungs but it quickly transpired that his prognosis had become more serious. Doctors noted concerns about his dysmorphic features, his almost complete lack of muscle tone and despite being a big bruiser of a baby, his inability to feed. That’s when our rollercoaster of a journey started and it’s all a mental blur now but ten days later after an MRI scan, we had an original diagnosis of polymicrogyria. At this stage, Cormac’s health had turned a corner and he was home with us, feeding well and becoming sturdier by the day.
We knew ourselves that this wasn’t the final prognosis and we were referred to a neurologist. At five months, Cormac was finally diagnosed with PKS through a blood array test. In many ways, it was a relief as we could now address his problems and move forward, nothing could match the trauma and overwhelming shock we experienced after his birth.
Six months on, our Cormac is thriving! He loves his bottle and food and is as a big as a house! He is sleeping well (most of the time) and his muscle tone is gradually improving. He is now attempting to sit up and roll over on his side. Although he is developmentally delayed, he is making progress at his own pace. He has missed most of his developmental milestones but did start smiling at six weeks and hasn’t stopped since! He thankfully appears to be a very contented little chap and seems to thrive on social interaction. He responds well to sound and although he is vision impaired, he has just started wearing glasses and that has made a difference to how he focuses and tracks objects. He constantly coos and babbles and likes to make his voice heard. Fortunately, he doesn’t appear to have any health issues to date except for a bout of bronchiolitis last year which set him back a bit but his airways system seems to be very clear now. Cormac is attending physio with early intervention and is due to start OT sessions soon. He is a delightful little guy and charms the socks off everyone who meets him, we all adore him.
We try not to dwell on the future too much but embrace the present and ensure that we help Cormac reach the best of his capabilities, whatever they may be. We were delighted to stumble across PKS Kids at the start of our journey; you can never underestimate how invaluable a resource it is for PKS parents, siblings and their families and friends. Your words and sentiments are so familiar.
Please feel free to email me anytime at email@example.com Fiona
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