4/28/10- I got a call from my doctor mid morning. She let us know that Hope's diagnosis is Thanatophoric Dysplasia. It's the diagnosis we expected but was hoping it wasn't. It is a severe form of dwarfism that as the doctors put it, "isn't compatible with life". Normally under these conditions, when a baby is diagnosed with TD, they usually live about three hours after birth. We will just proceed with the pregnancy as normal and will still have Level 2 sonograms monthly. Our next one is at the end of this week. It's really good to know what Hope has but also hard now that it's a for sure reality. Doesn't change anything in how we are feeling and are responding though. We are still full of joy and God is still supplying an abundance of strength. God has an incredible plan for our family and we don't want to take one opportunity for granted. He will use us through this and in this!
Hope moves and kicks so much. I love that feeling! She is a blessing to me and I am reminded daily of the privilege I have to carry her.
My friend Amy Crawford has begun a prayer chain for us and baby Hope. I know MANY of you are praying for us and if you would like to be a part of the prayer chain and have a specific time slot to pray, you can contact Amy at jwcrawford74@yahoo.com.
Hi my name is Mandy and I am mom to a little girl named Andrea that has a rare form of dwarfism. I just want to let you know that you and your family are in our thoughts and prayers.
ReplyDeleteHi! I came across your blog through Mandy! I'm Sheri, and my little girl has achondroplasia, a form of dwarfism as well. We'll continue to pray for you and your family. I have come across many friends in the little people community who have gone through similar, if not identical circumstances. If you would like more support, don't hesitate to contact me! (Neogurl_2004@yahoo.com)
ReplyDeletePrayers for your family during this time!
"For I KNOW the plans I have for you, declares the Lord. Plans to prosper you and NOT to harm you, plans to give you HOPE and a future."
ReplyDeleteJeremiah 29:11
Jamie...I will pray for you and your family during this time. I will pray God continues to show you his peace and give you comfort. Hope is blessed to have you as a mommy. XOXO
Hello, my name is Karen and I found your post through Jill Ibsen. Our granddaughter was born with anopthalmia last August and I know I will never forget what that felt like. I want you to know that I will be praying for you, your family and your daughter, Hope. You have just embarked on an amazing journey and will be challenged in ways you have never dreamed possible. Know that through all of it, God loves you and your daughter, and he will show it through others and that still small voice in your heart. I think you picked the perfect name for her.
ReplyDeleteDear Jamie,
ReplyDeleteKaylee and I have been following your blog and praying for you together. Your perspective of trusting God with each day of Hope's life is an encouragement to us. Your life shines even through the valley. We love you and your family. You have been a blessing to ours in many ways.
She is already defying the odds! God has formed us to HIs plan and Glory. I can't imagine a more loving family than The Reasons'.
ReplyDelete