I hope everyone watched Extreme Makeover Home Edition tonight. If not, you may be able to watch it online. I will be honest and say it wasn't easy to watch. I can't tell you the number of tissues I went through. Probably half my box. But I am glad I did watch it. It really opened my eyes to some of the challenges Delilah may face in the future. Every child with PWS is different. The severity of the symptoms can vary from one child to the next. However, the constant hunger is usually always a similarity with our children. We pray that Delilah will have a "mild" case (whatever that is), but we have no idea what the future holds for her. All we can really do is take it one day at a time. We will continue to provide the best for her, be that weekly therapies and trips to Gainesville to see Dr. Miller or just a cuddle on the couch and a face covered in kisses. Whatever she needs she will get. We will also do our best to be an advocate for her. People need to know what Prader Willi Syndrome is. People need to see what challenges it presents our children with. Knowledge is power, and we need that power to find a cure. So please, please, please help us spread the word about PWS. Feel free to forward this blog to everyone you know. There are great websites that have loads of information; PWSA and FPWR. Plaster Facebook with information about PWS. Just help us get the word out there, especially this month. Thanks to everyone who has already done this. You have no idea how much that means to me.
Just on a side note, I really loved the Safe Pantry. I see a kitchen remodel in the future!
Dear Heavenly Father, we thank You for Your love towards us. we thank You Father God for Your gifts that that You have given us. We thank You Father for Your Promise. We ask Father that You incline Your ear to hear our heart cries for precious Delilah Grace that she be healed of this Pradi Willi Syndrome. Father, let her childhood be as normal as normal can be. in the Name above all names we pray, amen.
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