I'm finally coming to grips with the change in her diagnosis. I have found a wonderful yahoo group just for parents of kids with Chromosome 8 issues. They are fabulous and have overwhelmingly welcomed me to their group. Their info and support has been very helpful. I also was referred to a site called Unique. It's a database and information site for people and families suffering from rare genetic abnormalities. They give lots of info and also take your info and connect you to others around the world that have your same chromosome abnormalities. This is wonderful because with something so rare you do have to search the world to find others with the exact same thing. Many people with chromosome 8 abnormalities also have other chromosome issues too and that kind of mixes it all up a little bit more.
Here is a great page of info on what P has in plain English.
The most encouraging thing is that she might actually be able to talk someday! That has always been my one wish for her because it makes her life and ours so much easier. It also makes it safer because not being able to talk or show what is wrong can really be scary. If she gets hurt and is crying, she can't just tell us where her booboo is. It's like asking a 5 month old why they're crying. You have no idea. She could be hurt really bad and you have no way of knowing unless you can see it.
I linked to your blog from your CDO post-- glad to hear that you finally have an accurate diagnosis.
ReplyDeleteMy son, Connor, also has a rare chromosomal disorder-- his is on chromosomes 1 and 15. He is also nonverbal, but has been able to learn how to communicate with us using PECS and sign language.
I always enjoy reading the blogs of other parents of children who have special needs. We deal with a lot of similar issues on a daily basis. Thanks for letting me stop by!