Sunday, April 11, 2010

Baby Cole

What a week it has been. As most of our dear friends and family know, we received some majorly devastating news last Monday at the perinatologist. Our baby Cole's femur and humerus bones were measuring in the 4th percentile. This worried our regular obstetrician, who sent us to Dr. Christian Briery, our perinatolist. We also found out that aside from his long bones measuring so short, his right femur (thigh bone) was curved, and my amniotic fluid level was higher than normal. All 3 of these things put together meant only one thing to him-our baby had some form of skeletal dysplasia. What, you ask, is skeletal dysplasia? I have been on the internet for a solid week researching it, which is the one thing that he (the doc) told me not to do but i'm a mother-you can't tell me something is going to be really wrong with my son but nothing else. There are over 200 forms of skeletal dysplasia's-the most common forms of dwarfism are achondroplasia and diastrophic dysplasia-which accounts for 80% of the cases of dwarfism. Also a quick did you know-85% of dwarfs are born to average height parents. So, we were sucker punched after 7 months of being pregnant, thinking I was carrying around a "normal" healthy child, and now this. It has been a hell of a week. We visited with our preacher Dr. Day which really helped alot. He explaind that all of the emotions I was feeling are completely normal, and he would be more worried about me, us, if we weren't experiencing the anger, uncertainty, etc. He also focused on the miracle of our child, and how we had each other, Parker, our friends, families, each other, and most of all, a baby which is so much more than so many people. The most poignant thing he said to me was that it was up to us to make the choice. We could chose to take this news and make the best of our situation and the rest of our lives, or we could chose to let it ruin us...well of course you know what we are going to do. So with Cole's due date only 6 weeks away, we are left not knowing ANYTHING other than the fact that our child has a severe disability. We go in tomorrow for an amniosentisis. This is a procedure to withdraw cells from the fetus (Cole) and send them off to test for Downs Syndrome-which they have not ruled out-and to test for certain types of dwarfism. Our hopes and dreams are that Cole will be a healthy baby boy, just a little person. But until his is born, we won't know if he will have so many of the common problems associated with dwarfism-brittle bones, etc.

This has been the hardest week of my life, and I couldn't have done it with out my husband, my son, my family, my church, my co-workers, my friends, and my new found support group and the friends I have already made there. I joined a support group called Parent's of Little People and have already me 3 girls in Louisiana with little people-they have done nothing but show me the joys of their children, the blessings that have come from a life shared with these children, and the strength and support that I need knowing I am not alone in this. Bryan and I are sure that we will love and support Cole to the best of our abilities, and raise him to have the most normal life he can. Please pray for the best-a healthy happy little man!

5 comments:

  1. I will be praying for your sweet baby boy. Sounds like y'all are in a great place!

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  2. i'm so glad that you found a support group. besides your faith in God, there is nothing more comforting than having a community of people who understand your struggles. i will certainly be praying for the things you mentioned, and especially today for your amnio. i have a friend with a precious special need's child and would be happy to tell you more about her and direct you to her blog so you could get a glimpse into their "day to day" lives. just let me know if your interested. y'all are very loved and will be very blessed by cole!

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  3. Hi Lindsay. I am mom to Simon who is 2.5 years old with an undiagnosed bent bone dysplasia and Jude who is 7 months old and average height. We found out at 17 weeks gestation that Simon had a skeletal dysplasia. They were able to rule out Downs Syndrome and Spina Bifida through blood tests and a nuchal translucency ultrasound (you may be too far along for that now). Anyway, he has short long bones and his femurs are bent. He does not have the other typical characteristics of the known bent bone dysplasias, other than the bent femurs, so his dysplasia is still considered undiagnosed. He is an amazing boy and one of our two greatest blessings! He is walking, running, talking, busy as can be . . . a healthy a 2.5 year old boy that happens to be little. :) Please feel free to check out our blog . . . http://greeneadventures.blogspot.com. There are many other links to POLP blogs on there also. Many of us have not yet met in person, but I am lucky to call them good friends! They have amazing kids and are an awesome support group!

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  4. I forgot to say . . . Congratulations!! We'll pray that baby Cole is healthy and that everything goes well with the remainder of your pregnancy!

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  5. Thanks for sharing your story. I am a little person and my parents are average height. I am glad you were able to get in touch with some other parents in La. I am on the board of directors for Little People of America. If you ever want some information about the group or if you want to connect with other parents, please let me know - garnold@accessliving.org

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