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So proud!

As you know it has been a rough week for me. In addition to the two kids who are now with Jesus, there is a very little one, named Cash, who is presenting with severe PBD-ZSD (still commonly called Zellweger Syndrome) who needs our prayers tonight. Cash is currently in the hospital and his parents' have set up a Facebook page for him, in which they are sharing updates and prayer concerns. Please keep the Tweedy family in your prayers.

So, in the midst of all this sorrow, Ethan decided to brighten up our day. Tonight he decided that he was finally ready to start putting the coins in his treasure chest all by himself! We have been working on this for nearly six months. It may be a simple task for a typically developing child, but for kids with PBD-ZSD these are the type of things that we celebrate and shout for joy about! The fine motor and visual skills needed to do  something like this are things that Ethan has to work so hard to be able to obtain. This made our day!


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