HARPER

Harper was born by C-Section on October 17th, 2016. She started losing weight from the start, but since it was normal for a newborn no one was worried. At 4 days old. her family was discharged from the hospital with a promise to see their pediatrician the next day. They were told at the hospital that Harper had a tongue tie that was affecting her latch so her mom, Fran, got in touch with a lactation consultant and the pediatrician and worked hard to get Harper gaining weight. 

She began slowly gaining, but not the way she was supposed to. Harper would spit up a lot of her feeds, it was hard to track how much would come out.  At 3 weeks old Harper was diagnosed with acid reflux and delayed stomach emptying. She was put on medications, but they didn't help. When Harper was 2 months old, her parents decided to go to McMaster Children’s Hospital to try to get some answers as they knew something wasn’t right. Harper was admitted for failure to thrive, and stayed there for 5 days. After lots of testing and trying to figure out what was going on with her, she was referred to Niagara Children's Centre. 

Upon discharge from McMaster she was referred to a dietician and occupational therapist. They worked together and worked with her parents to try to get Harper to stop spitting up all of her feeds.  Harper started to slowly gain weight. 

Through the remainder of that first year she had numerous tests done through McMaster, including genetics where it was found that Harper has a rare genetic disorder with no name that seems to cause low tone throughout her body and developmental delays. 

"They told us they haven’t seen this combination in DNA since 1977 and they had no information for us, or what the future holds for Harper. This was a hard pill to swallow," shared Fran.  

Harper had a G-tube placed when she was 11 months old and she began to gain weight. Within months her parents could see Harper starting to get more mobile and interested in her surroundings. Her occupational therapist decided it was time to meet the team at the Children’s Centre. At this appointment her parents were introduced to a social worker, physiotherapist, and a speech language pathologist.

"Our social worker is extremely knowledgeable about funding available to the families, and sat down with us and went through the tons of paperwork that the hospital had given us. I was so overwhelmed but having her there to walk us through everything made it a lot easier."

Harper has been attending therapy at the Centre weekly for about 3 years and she is thriving! 

"We watched her go from a baby who couldn’t sit independently to a toddler that is so close to walking with the help of our Occupational Therapist and Physiotherapist.  She still isn’t talking but makes lots of sounds and can definitely communicate with us thanks to our speech therapist.

"We still have so far to go, but have come so far from where we were. I would hate to think where we would be without the therapists available to us at the Centre. We enjoy social programs that are coordinated to assist the kids at whatever level they are at. I take advantage of the Parent Talk Support groups that are available. Raising a special needs child can be extremely tiring, frustrating, and lonely world but is so rewarding."

 

 

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