Monday, February 14, 2011

Top Ten Good Things About Prader Willi Syndrome Babies

1)  When she was first born and didn't make any sound and slept anytime she wasn't being stimulated, it was easy to take a nap.  Theoretically.  If it wasn't for the enteral pump, bottle feeding for therapy, breast pumping, PT/OT/ST, eating and taking a shower once a week, I would have definitely been able to sleep.

2)  I could take her with me anywhere.  She never cried, moved or made a noise.  People who didn't know me told me I was a great mom with an amazing baby and I just smiled and said, "YES, I AM".  Let them envy.  I have plenty of my own for their baby's healthy screams.

3)  She could fall asleep anytime, anywhere.  I never worried about not scheduling therapy during her naptimes, because she fell asleep anytime she wasn't being stimulated.  I figured she got enough sleep, get her up and get her to work.  The more therapy, the merrier.

4)  She was very snuggly.  She never tried to wriggle out of my arms.

5)  She would let anyone hold her without crying.  So I told everyone, "See, she really likes you!!"  All she cared was that she had physical contact with someone.  Although to be honest, she has always shown a clear preference for men.  Hussy.

6)   She has a high pain tolerance.  So when I dropped her on her head, she only cried for about 5 seconds. 
Kidding.  She cried for 10.  OH, still kidding... I didn't drop her on her head. Chill.  I have accidentally poked or prodded her in the process of changing a diaper or moving her around while trying to wrestle a 4 year old at the same time - you moms know what I am talking about - and with no real reaction. 

7)  She'll eat anything now that she's on baby food.  So I feel like a great mom, feeding her a wide variety of fruits, vegetables and meats with no protest.  She only "kind of" spits out things by smooshing it out her mouth, but it's mostly bland food.  She has a good palate at an early age.  She loves mommy's cooking.  She is the only one in the family who doesn't complain when I make collard greens. 

8)  Since she was failure to thrive, we're on Neosure now that my year of pumping milk is over with and it's paid for by insurance.  Regular milk is expensive.  Thanks, Tricare.

9)  I never had to get up in the middle of the night every 2 hours.  It was more like every few minutes to listen to her breathe, check her temperature to make sure her body was holding temp and reposition her head and body so she wasn't too floppy.  I learned to sleep with one ear open until she stabilized at home.  I never woke up to screaming cries, but the sound of the alarm on the enteral pump going off to tell me it was time to pump milk and feed her again.

Wait, wasn't that supposed to be a good thing?  Oh well.  Fail for #9.

10)  When she finally smiled at me almost a year after she was born, I knew it wasn't gas.  She was smiling AT ME, and I EARNED THAT SMILE!


Lisa said...

Love this post! I used to joke with my husband that I was the only mother in the world who could take her new born son to a movie without even a peep from him. I never did try it though.

Laurie said...

Lisa, I know exactlly what you mean! I used to take Livie to meetings knowing she wouldn't make a peep. Everyone would look at me like I was crazy, bringing a baby.