Saturday, September 20, 2008
Found Verna
Thanks an anonymous commenter, we've found Verna. She's the grandmother of a 26 weekgestation boy named Noah Gabriel Wall. This is his parents first child. It looks like they thought he had anencephaly (which is where there's not much, or nothing above the eyebrows, often the brain isn't even developed), but instead it's been determined he has Meckel-Gruber Syndrome. MGS is often associated with encephaloceles, and in this case with anencephaly. Anencephaly babies have an extremely short life expectancy. Drop in and say hi. She doesn't write tons about it, but you can at least read what she's written. She started talking about the baby in May 2008.
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Humbling... great blog.
ReplyDeleteThanks Susie! I wanted to ask you a question about Joshua's cele because of somthing I can't get out of my mind about Elijah's maybe you can email me instead of asking on the blog okay (whenever you get a chance) Love YA my friend!! Marie
ReplyDeleteHey sorry for not leaving my e-mail address! I thought of it later that it would have been helpful, thank you for sharing. Were you scared too of how your baby would look when he was born? I think Jo is getting more okay with it by the day. We have searched the net a lot and you were the first (except medical )pics we saw. I have fallen in love with Joshua! How you must miss that boy. She has made email contact with another Mom who is about to deliver her 2nd MG baby. It has helped her a lot. She is in the process of starting a blog.
ReplyDeleteWill post on mine once she's up and running with it.
Hank and Jolene have another US on Oct 2nd and one of their questions will be if they can measure the cele, then we will have more of an idea and then we need to find someone to crochet!! I went shopping yesterday and bought 4 premie outfits! Oh how we are praying for a few minutes of life with Noah!! He has the cystic kidneys, the cele, 6 toes on each foot, club feet and bowed legs. I am praying that hs will not have cleft lip. But our God is in control! How long was your little man? On the pis and the youtube clip he looks so tall!
well that is all for now, how your weekend goes well.
Verna, Noah's Nana
vernafriesen.blogspot.com
The internet is a powerful tool in getting in touch with others. I am so sorry for your loss but God shines through in your blog.
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