We've been in email contact a few times with Tonya and Knoah. Their website is a really interesting read for anyone who's just started on the road we have and it contains loads of useful links. They've been lovely to us so I'd just like to thank them for all the support they've given to us already!
Tonya sent us this link the other day which explains a lot about about skeletal dysplasia in babies before they are born. It's definitely worth a read.
The internet is an amazing resource! Never before has so much information been available so readily. When we came back from the hospital after getting the prognosis, we naturally went on the internet to try and get some more information. Tonya's website was one of the first we came across and it was such a relief to see a beaming Knoah reassuring us that everything would be alright!
Just a word of warning when using the internet though... sometimes you can have too much information and this applies whether you are dealing with Achondroplasia or any other illness. The first thing I (mistakenly!) did when reading the link above was to chart our little one's bones on the graph and check the probable diagnosis. If I read the graph correctly (not my strong point!), this meant either Thanatophoric Dysplasia (which is lethal) or Osteogenesis Imperfecta which is brittle bone disease.
Panic! This wasn't what I thought! But then... Reality check... they've already told us they think it's non-lethal and his bones are perfectly formed on the scan (although much too small!). So it can't be either of those then.
The lesson to learn is the internet is useful but it's the doctors who have the best idea... Not Andy armed with Google! Get some background info by all means, but don't go bananas worrying about all the possible outcomes without some solid evidence to back it up!
I'm a Christian, so I'm probably bias, but I think the Bible has some good advice about taking it one step at a time.
"But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6 v33-34
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3 comments:
Andy and Clare,
Yes, Please don't worry right now!! It is good to have information, but until Little Dungey gets here, enjoy your pregnancy! It will pass all too quickly and you'll wonder were the time went!
Lots of Love!!
Welcome to our circle of friends. And please don't worry, God has a way of making these babies more special than can ever be described in any text. You are so lucky to have found Tonya's blog, I wish we had found it during my daughter in law's pregnancy. Enjoy this time, and have faith that your little miracle will bring you lots of joy.
Candi
candiogirl@yahoo.com
YaYa to Bryan
Born March 13, 2007
Diagnosis of Achondroplasia
A Gift from God
Hey bro and sis and Bump, thought I'd just leave a comment on your blog! Hope you're all doing ok and Clare's feeling well! I've been learning to knit today, so I can make some things for Bump! It's a bit holey at the minute, but I'm sure I'll improve! :)
Love to you all!
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