Cody had his genetic appointment down at the main campus of Children's Hospital this afternoon. We haven't seen the Geneticist in almost 4 years! Over the past summer, the dr. was at a convention and met another dr. who had a similar case like our children. So, we are doing a research study with this other family in Canada who have similar physical features and developmental delays like Cody and Carleigh. He is also trying to get other biological family members' test samples to see if they find a new X-linked Chromosonal Syndrome. It would be exciting if we find a new syndrome and find ways to better help my two kiddos in the future.
On a less cheery note, it was not fun being stuck in the hospital for 3 hours plus having to take both children down to the lab to have their blood drawn. Carleigh had never had her blood drawn plus they had difficulty getting enough blood out so they were digging in her veins, poor thing! She was upset for probably 20 minutes (can we say DRAMA QUEEN?!!) whereas Cody had his bandaid pulled off in less than 2 minutes and was a happy camper before we reached our parking spot in the garage.
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3 comments:
ROFL! The difference in their responses to having been stuck cracked me up. Poor Carleigh (I think I'd have been more like her as a child.) And then there's Cody. "It's all good, Mom!" :)
I really hope this new lead provides answers. We don't have all the specifics on Reece either. We know he is likely on the autism spectrum, but because his presentation is so mild, our Ped doesn't feel the time, expense and frustration would result in our being better able to address his needs than we currently are. Sigh.
Blessings,
~Toni~
That must be frustrating Toni! At first we thought we might never get a real diagnosis, but it is so hereditary and the facial feature of Cody and the birthmom are uncanny... and then when I saw photos of the children with similar issues, I said, oh we must sign up for this for the sake of all the kids.
I completely agree. I'm hoping right along with you that it yields answers that would ultimately help Cody and others too.
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