Peyton’s Story

Peyton is a twin but she had a very rough start in life.  She virtually stopped growing at 20 week’s gestation, and was diagnosed with intrauterine growth restriction (IUGR).  Born at just over 2 pounds, she suffered from a brain bleed, low platelet counts and a host of other issues. Her first few weeks in the NICU were touch and go.  After she was stabilized, it was still several more weeks before she was discharged, due to her resistance to bottle feeding.  Within 48 hours of coming home, however, she was readmitted to another hospital with low body temperature.  After two more weeks in the hospital, it was determined that she was aspirating her liquids and needed a g-tube placed.  A while later, we learned that her eating challenges were due to hypotonia;  Peyton’s muscles were weak and floppy – affecting her whole body.  We’ve also since learned that she has two large chromosome deletions, affecting a large number of genes.  We are not sure if her hypotonia is caused by her brain bleed or the deletions and don’t know her long-term prognosis.    
Peyton receives SLT twice weekly, Cognitive Therapy once weekly and PT twice monthly.  In addition, she is receiving occupational and swimming therapies.  

Over time, Peyton has overcome many of her challenges – she was able to roll over at 10 months, sit at 15 months, crawl at 18 months, and at two and a half years old – she is cruising and trying to walk.  At six years old, she is nonverbal and has the cognitive abilities of a 12 month old.  On the bright side, she is babbling and we think understands more than we give her credit for.  There’s a lot of light and life in her eyes.  She’s just ‘trapped’ for now and needs extra time and therapy to catch up to her twin sister and other peers.

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