Wednesday, May 19, 2010

How I became mom to my miracle PWS son part II...

So we got back from our mini weekend springs...massage...relaxin. God was just gearing us up for our next adventure! They kept flip flopping him from the hospital to back with his bio family. He originally (and finally) was taken away from bio family due to medical neglect. When he was born he spent 3 months in the hospital...then he went home with his biomom. She also has did the father so they were not capable of taking care of a medically fragile child. There are more details but that would be a novel seriously. He came to us the last weekend in Feb 2000. He came with a SW...her supervisor...a nurse to train us on tube feeding...another person to train us on the apnea monitor and C pap( I think that is what it was called it has been years) machine for when he slept. He was 4.5 months old. He sat there in his car carrier and I remember looking down at him...did he smile at me adoringly? hahahah no he rolled his eyes, turned his head and went to sleep. :)

It was a crash course even though both of us had some training. His crib was in our bedroom and it was like a disco with his feeding machine clicking and his apnea monitor flashing. His care completely took over my (and hubbys) life...I only admit this now but I stayed so busy with his needs, drs appts, DSS visits with the birth mom that I rarily remembered to eat and got REALLY skinny. That is when I realized- in order to take care of a child you must take care of yourself...... more later. (this is a crazy month!) I may even find a bitty picture of him for next time.


  1. Wow! I cannot imagine... you guys were courageous to commit to his precious little life... must have been pretty scary too.

    I saw your question on my camera... I use a canon rebel. I am slowly learning how to use it. I have gotten some books at the library but haven't spent much time reading them. I am finding most of my help online at blogs of photographers (go figure:)

  2. thank you for taking the time to write about this. I pray i have the humility and courage you had and continue to have.
    God bless you and your family.

  3. This is such a sweet and encouraging story! I'm so amazed and proud of you! How happy your son must be to have such loving parents!

    Thanks for sharing this with us! You are such an inspiration! I spent two nights tube feeding a little baby who died after 14 days. Tim and I babysat her so her parents could sleep a little. Her name was Darcy Anne. I made quilt just for her and it has her footprints on it.

    That is such a scary and all consuming thing to care for a child in a situation like that! I can imagine it would have been hard to think to eat!

  4. Hi! I just wanted to say hi and thanks for your comment. I can't believe you live near Maria Cilley! For years, people have asked me if I was 'the' FlyLady because I've taught so many seminars on how to do her system. I've tried to contact her but she never replies. Ah well...she has a lot people to help. :o)

    Actually, my weekly assignments are a spin off of her system. What do you think you most struggle with with your home? How well do you know the Flylady stuff? I'd love to help--it's my area of 'expertise'. Donna