Child Spotlight: Caius

 

1. What is the name of your child’s diagnosis?

When I was 13 weeks pregnant we learned that our babe had Down syndrome. We were encouraged to consider terminating the pregnancy but this was never an option for us. When Caius was born he was found to have 3 holes in his heart. Because of this and a few other concerns he stayed in the NICU for some time. He was discharged with a feeding tube and several medications. When he was 6 months old he started having seizures and was diagnosed with infantile spasms (a “catastrophic” type of epilepsy). After 3 years of 300+ seizures a day and a packed schedule of medical appointments and procedures we are finally getting to know our sweet and kind little boy.

2. Tell us a bit about how this affects your child

Caius is delayed in his gross motor development, fine motor skills and communication (partially because he has Down syndrome and partially because he struggled with seizures and seizure medications for so long!). He also has hypotonia (low muscle tone). We definitely notice that he gets frustrated when people don’t understand what he wants or how he is feeling so we are working on introducing additional ways for him to communicate. He WILL reach the major milestones like walking and talking, it might just take him a little longer with a little more help.

3. What have you learned from your child and being his/her parent?

Caius has taught me how to celebrate the “little” things in life. I used to rush around always looking for the next best thing but thanks to Cai Guy I am able to slow down and appreciate so much more. The little things ARE the big things.

4. What makes your child happy and brings them joy?

We have a newfound love of puppets! Music and lights are also a sure fire way of making Caius happy. I think he is the only person that actually enjoys my singing.

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