Sunday, March 8, 2009

3 years ago today

We got Peanut's diagnosis of Prader-Willi Syndrome. We were devastated, but yet the grace of God was so over-whelming at the same time. I'd like to share a journal entry I wrote the day after we heard the diagnosis.

March 9, 2006
Today I am thankful. I'm thankful that Phillip was premature, because now he is getting therapy to strengthen his muscles and to help him to suck six weeks before he was even supposed to be born. I'm thankful he was in the NICU instead of the newborn nursery because the doctors and nurses had the experience to know there was something wrong with him besides being premature. I'm thankful that the doctors' trusted their instincts and ordered the tests even though they though they thought they would be negative. I'm thankful that Phillip was diagnosed at 2 1/2 weeks because now we have so much more time to prepare for the struggles ahead of us. I am thankful for the incredible support we have already received from our church. I am thankful for the enormous grace that God has given me today, because I have no idea how I am able to be thankful. Our God is so mighty and powerful, and yet he knows my name. He knows Phillip's name and has known him and loved him from the foundation of the earth. It is an honor to be able to worship such a marvelous God.


Christy said...

Praise God!

Caryn said...

Amy, perhaps God created Peanut just as he is to bring glory to Himself through the testimonies of you and Filbert. And what a joy Peanut is to all who know him.

mrsbuckett said...

Hi Amy. I don't know you..I went to Moody with Mandy...

I'm thankful you have the opportunity to give others hope and support in raising a child with prader willi. I have worked with a man and a woman who were both adults with it. The woman's family was the most supportive and she has lived a great successful normal life. It's great to hear your successes and hope through your parenting.

Grandnut C said...

Hazel is my hero!!!
Peanut is also my hero!!! He has worked very hard to get where he is today. He started school a couple of weeks ago and loves it.
God is good even during the tough times.