A Little Bit About Me…

My name is Lana, I am a physiotherapist in Ontario, Canada and am the proud mom of 2 little kids. I have a daughter who is 5 years old and a son who is 20months old. My daughter is a “typical” girl but exceptional. She has always slept, eaten and spoken well. She is also very social, athletic and smart. My daughter was 3 1/2 years old when my son was born. He has been a challenge since birth. He had a low birth weight (eating and gaining weight has always been a stressor and a struggle). At about 4 weeks old he failed his infant hearing screen and we were just about to have our audiology appointment when at 7 weeks old he started having seizures. That took us to The Hospital of Sick Children in Toronto. An MRI of his brain revealed that he had Polymicrogyria (PMG) meaning that he had extra small folds in bilateral frontal lobes of his brain. We were then referred to genetics. My son was diagnosed with 1P36 deletion syndrome (a portion of his first chromosome is missing) and this caused the PMG. There are many potential challenges associated with this diagnosis including developmental delays across the board (social, speech, cognitive, gross and fine motor). My son has delays in all of those areas. He has moderate to severe hearing loss in both ears and wears hearing aids. He has seizures (which are currently controlled with medication) but we are always on guard. Eating and weight gain has been a struggle and he is not a great sleeper. But he is the happiest little guy with the sweetest most infections smile. We are so happy that he is ours. But it is a constant challenge to balance the needs of both of my children.

I know that I am not alone in raising a special needs child while also trying to create a “normal” life for another sibling. I wanted to share my story to date as well as my journey ahead and hopefully provide some helpful tips along the way. I also hope that whoever is reading this blog may be able to help us in return by sharing things that they have found helpful. I am wanting to create a space that can be mutually beneficial, that can be a positive influence on the lives of people raising a “special” family like mine.

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