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!

Latest Activity

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Reply: D/A Update - Slow Heartbeat?
I own a doppler and have worried at times if the hb hasn't been in the 130s/140s. When I...More
Me (41) DH(48) I will be induced sometime the 1st week of January 2011 We're on the Pink Team! M/C 6/08(unknown) M/C 8/09(trisomy 15)
Posted by agbdiva
Reply: OMG! Seriously?!? Another Vent
Tell your MIL to go fly a kite. You're going to do what's best for this baby. She's the one...More
Me (41) DH(48) I will be induced sometime the 1st week of January 2011 We're on the Pink Team! M/C 6/08(unknown) M/C 8/09(trisomy 15)
Posted by agbdiva
Reply: The List!!!! 10/14/10
I feel like a fool bawling my eyes out right now. I'm so happy being in the 3rd trimester....More
Me (41) DH(48) I will be induced sometime the 1st week of January 2011 We're on the Pink Team! M/C 6/08(unknown) M/C 8/09(trisomy 15)
Posted by agbdiva
Reply: Painted the nursery; First baby shower tomorrow, n...
Calming vibes coming your way. Try to enjoy your day!
Me (41) DH(48) I will be induced sometime the 1st week of January 2011 We're on the Pink Team! M/C 6/08(unknown) M/C 8/09(trisomy 15)
Posted by agbdiva
Reply: The List!!! 10/7/10
I know!!! Yay us! More
Me (41) DH(48) I will be induced sometime the 1st week of January 2011 We're on the Pink Team! M/C 6/08(unknown) M/C 8/09(trisomy 15)
Posted by agbdiva
Reply: When?
I know exactly what you mean. I am 25wks and until last week I was really struggling...More
Me (41) DH(48) I will be induced sometime the 1st week of January 2011 We're on the Pink Team! M/C 6/08(unknown) M/C 8/09(trisomy 15)
Posted by agbdiva
dr appt :)
I had my bi-monthly check up today. Little Miss Charlotte is 1.14 lbs and is measuring...More
Me (41) DH(48) I will be induced sometime the 1st week of January 2011 We're on the Pink Team!

M/C 6/08(unknown) M/C 8/09(trisomy 15)
Posted by agbdiva
Reply: GTKYFP 10/5/10
Motherhood maternity jeans. I only have 1 pair so I have to keep washing them after I wear...More
Me (41) DH(48) I will be induced sometime the 1st week of January 2011 We're on the Pink Team! M/C 6/08(unknown) M/C 8/09(trisomy 15)
Posted by agbdiva
Reply: The List!!!! 9/30/10
Thanks Mel!
Me (41) DH(48) I will be induced sometime the 1st week of January 2011 We're on the Pink Team! M/C 6/08(unknown) M/C 8/09(trisomy 15)
Posted by agbdiva
Reply: Just for fun - Cravings
1st tri: Virgin Bloody Marys, chili dogs, cheeseburgers, Sprecher rootbeer, hot and sour...More
Me (41) DH(48) I will be induced sometime the 1st week of January 2011 We're on the Pink Team! M/C 6/08(unknown) M/C 8/09(trisomy 15)
Posted by agbdiva