CdLS Awareness Day 2014

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So, here we are three and a half years after my last post, on CdLS Awareness Day.

Ben is now 8 years old.

We can hardly believe it ourselves.

He is doing remarkably well.   He still continues to enjoy exceptionally good health.  He is still a little guy, and weighs about 30 lbs.

He is eating all his daytime meals orally with a spoon (no more Nuk brush!), and he can drink liquids from a cup.  He is not close to being able to feed himself, however, and he sometimes plays games with the person attempting to feed him.    I have to say that he tends to eat beautifully for me.    What can I say?  He loves his Mom.  🙂    He still gets some supplemental formula tube feeds overnight.

He is still not walking, but he has learned how to get into a kneeling position and can pull himself up to furniture.

He still does not talk, but he hums and vocalizes a lot!  He has a very sunny disposition…most of the time.

It amazes me that he never seems to stop learning.

Life is good!

Benji smiling swing