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agbdiva

Joined: 05/24/2010
My Story:
It's been a little over 11 months since I delivered Charlotte a month early. What a happy day that was!

She was born with hypotonia(low muscle tone) and had to stay in the hospital 6 days after she was born because she wasn't able to take a bottle well. She was very lethargic. Her feedings mostly had to be gavaged. On the evening of the 6 day a new pediatrician came on duty. She immediately said something wasn't right. We thought maybe Charlotte had aspirated milk from a bottle feed. A few hours later, Charlotte was being flown to a children's hospital an hour away. Did I mention it was also December 23rd?

We spent Christmas and New Year's in the NICU. We were lucky enough to get a room at the Ronald McDonald House. My husband and I had to play the waiting game while tests were performed and Charlotte got the care she needed. After 3 weeks in the NICU we found out Charlotte had Prader-Willi Syndrome.

Prader-Willi syndrome is a rare disorder present at birth that results in a number of physical, mental and behavioral problems. A key feature of Prader-Willi syndrome is a constant sense of hunger that usually begins after the first year of life. Charlotte will never feel full.

After the initial diagnosis, Charlotte received occupational therapy, speech therapy, and physical therapy. She got a g-tube and 5 days later we were sent home.

Life has had it's challenges so far, but most of the time there is joy. I love Charlotte so much and feel blessed to be her mom!

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