I dunno if any of you remember but I said about 6 months ago my niece (the most beautiful and wonderful girl in the world) was being tested for downs, trisony, etc. From the moment she was born her face wasn't right and than she wasn't hitting any milestones and flunked her hearing test.
She tested negative for Downs and Trisony and has started doing much better on milestones (although she is still behind). Well my brother told Chris and I today that what she has is Waardenburg Syndrome. She isn't hopefully going to be severely mentally handicapped but she will need extra help. Our big concern right now might be deafness or profound hearing loss. She might have other defects the are congenital but we will not know for a while. And of course she will always be different looking.
We promised my brother and my SIL that Harmon will always be there to protect her (they likely will attend the same high school even if we stay). They also asked us to be there to care for her if something ever happens which is a wonderful honor. I love that little one so much! The ironic thing is I served a mission working with the deaf community for a year and a half. Deafness isn't the end of the world and if she has it I know how to help my DB access resources etc early!
So that is my follow up on her Not the best news but not the worse either. The Lord always has a plan and I know we are all so blessed to have this angel in our lives.
Re: (long) An update on my niece who we thought might have Downs...
Wow, I'm so glad your niece got a diagnosis. That is the first major step in being able to help her conquer all her challenges. I know the pain your BIL and SIL are feeling and I hope this brings them some relief.
Thank you for sharing her story, she is so lucky to have you in her life. Would you mind reposting your story on the special needs board? Those ladies are always appreciative of positive stories like yours.
You're the best, Francisca!?
That is wonderful that your mission was with working w/the deaf community. It is ironic how your life leads you to where you are.
I am so happy to hear that your neice has such a wonderful support group!
As they used to say on GI Joe, "Now you know...and knowing is half the battle."
I'm so glad they know what they are dealing with, and have a better idea of what to do for your niece, and what challenges she may have to overcome in the future.
Your brother is lucky to have you. And your niece is lucky to have Harmon.