Faces of PKS
Patrick was born June 7, 2010, a healthy, beautiful baby. We had no idea, at that point, that anything was different. I had extra amniotic fluid while pregnant, but nothing else during the 9 months, that indicated a problem. After he was born he had a hard time latching on and feeding, but there wasn't an immediate cause for concern. I really started to get a feeling that there was a problem around 5-6 months when he wasn't making the milestones that he should have. It was the mothers instinct I guess, because people just went on about how all kids learn at their own pace and that he is fine. Well as a teacher I realize that, but as a mother, you just know when something feels off. So the pediatrician set us up with early intervention. She also thought we needed to see a geneticist, because of his delays along with some of his facial features that were becoming more evident to us (wide spaced eyes, abnormal hair pattern, etc). We walked into the geneticis'ts office as a family and she knew right away, just by looking at Patrick, and hearing his symptoms, that he had PKS. Sure enough his blood test came back positive and Patrick was diagnosed on March 31, 2011, he was almost 10 months old. She explained to us what it was and we went through genetic counseling to help us better understand it. I told the doctor to give me a website that she trusted for more information, because if she didn't, I would google it and we all know how well that would turn out. So she gave me the pkskids website, which has been a great resource for not feeling alone in this journey.
It's weird how you always say you forget your life before you have kids, but if you've ever had a child diagnosed with something, it's like you forget your life before the diagnosis. Those first few months were a blur. Trying to understand it, what was our next step, emotions running crazy. But it was almost a relief that we could put a name to it or that I wasn't going crazy because I knew something wasn't quite right.
Patrick is 2 and a half now and doing great! He is making progress at his own sweet pace. We have been very fortunate that he has not had many health issues. He is impacted mostly with physical and cognitive delays. He has physical and occupational therapy every week. His teacher comes once a week as well to work with him and sing songs, which he loves!!! He can sit up on his own, he can hold his sippy cup on his own, he LOVES his iPad and is using it to help him make choices. He loves his big sister Avery (10) and his little brother Jameson (6 months). He laughs and babbles with them all day. He loves to play with his daddy, especially when he swings him up and down.
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There is not a day that doesn't go by that I am not thankful for Patrick (or our other 2 kids). Each one of them teaches us something different. Patrick has taught us to slow down and celebrate the small things in life. Whether its the fact that he finally picked up a toy after trying for months or when you finally see him enjoying something, like a song, and it brings a big smile to his face:) We get excited and celebrate them all!!!
He is a lucky little boy because of the love and support that surrounds him!!