Dear Friends,
This seems like a good day to make this post I've been in anticipation about for some time. About a month ago Lydia had a blood tests to confirm a genetic disorder: Chromosome 22q 11.2 deletion syndrome is the full term, but it's generally referred to as 22q. Since most of you know already I'll spare the spill, but here's the official website's definition:
The 22q 11.2 Chromosome Deletion Syndrome on the twenty second chromosome that can cause such health problems such as heart defects, immune deficency, cleft palate,developmental delays, learning disabilities, and social/environment issues.
Here's the linkhttp://www.22q.org/ to find out more. I tried to paste some more info but I couldn't get it to work really well. When you get to the main page click on "what is 22q". Not only will it answer some of your questions about it, but maybe you might know someone who might want to get some testing done.
So far lots of testing as there is a wide array of what we don't know yet. The good news is this: Lydia exhibits mild symptoms besides the VPI associated with Speech. Everything we could be doing to help her we are currently doing...which was nice to hear. God has truly led us here. If we weren't in Philly we wouldn't know until much later in life. Also, I just want to add this event as it has proved to be an amazing resource and blessing in my life. In short it won't mean much to you, but I've been to China and back to figure out Early Intervention and how it applies to Lydia. The end product was tears and frustration. Amy, Tom's sister, lives near D.C. and is the ultimate at educating her kids and making it fun. So far, I'm not that great of a "Teacher-Mom", but I feel that we are near Amy and her family for a reason: she is helping me help my daughter when I felt completely overwhelmed in the education department not to mention completely unorganized. So Amy, if you read this just know I'm so grateful the Lord sent us to live by you. You are truly an inspiration to me.
I'm not sure what's around the next corner, but the only thing we can do is whistle while we work and hope for the best!
What a relief to have a diagnosis. After all those doctor visits, at least you know what's going on and you can go from there. I hope they can help your sweet little girl. It's good to see some updates, by the way.
ReplyDeleteLydia is very lucky to have such wonderful parents. I'm glad you were able to find out now rather than later in her life. It's amazing how much difference Early Intervention can make. Although I haven't been through what you are experiencing, in my role as a Music Therapist I've worked with many families who have. The Lord will continue to bless you with the ability the give Lydia the help she needs.
ReplyDeleteEarly intervention can make the biggest difference, but it is even more of a difference that she has wonderful parents like you to help her reach all her goals, the Lord has obviously helped you and her this far in the journey.
ReplyDeleteTara, you are amazing and the fact that you recognize that others have talents to learn from means you don't even know how amazing you are! I love you and let us know when there are things folks from far away can do to help. Maria
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