So we now have a working diagnosis for Spencer...Ohdo Syndrome. It fits. He has the eye stuff, and the facial stuff, the delays, etc. It suits him. The thing I'm devastated about is that it also comes with severe disabilities. It's a very rare genetic disorder and less than 1 in 100,000 people have it. There are no tests right now to confirm. He is on lists for studies.
We always knew that this could be a possibility, but we always hoped that nothing would be "wrong" with Spencer and that he would grow up to be an engineer, doctor, and astronaut. I always vowed he would be a productive member of society...we live in a world where a person with a genius IQ can do nothing, while a person who is severely mentally retarded can change the world. No matter his ability, I just hope I raise him right.
Today is just hard because I've suspected for a while now that Spencer is going to have some long term learning difficulties. This potential diagnosis almost confirms that fear. I will never stop hoping and believing in Spencer, but today I look at this beautiful thing we created and can't help but mourn for all the things that you expect when you have a child. I wouldn't trade Spencer for the entire world, but I hate what he has to go through and the challenges he may have to face.
Tomorrow I will say he will be the smartest kid with Ohdo Syndrome there ever was, but today I mourn.
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here is me commentig great blog to view mine click on my name :):) your boy is a miracle so many are it is great to have a name to the problems i beleive it helps not only us but the drs working with you to understnad love u my fb firend xxx
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