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Symptoms of Rett Syndrome | Share for Awareness

  Rett is a progressive disorder – it will get worse and worse until there is a cure.  In other words,  we are never out of the woods.  Every girl’s Rett syndrome is different. These were Maggie’s Rett symptoms last year. Maggie has lost her speech. Maggie’s arms & hands have Parkinson’s like tremors. Maggie hasn’t[…]

palm springs

Palm Springs

A couple of weeks ago, we took a little weekend trip to the desert because nothing says relaxing like 109 degree temperatures.  It started out auspiciously with Maggie unable to calm her body, communicate her wants or regulate her body temperature.  The last one was a new discovery.  She’s always run a little hot, but[…]

Hand over hand battle

For the longest time it has felt like we were losing the battle with hand function.  Stopping any more loss of functions for Maggie has been yet another one of our primary goals, since the diagnosis.  We spend most of everyday, watching what she can do, discussing what we saw that day and figuring out ways[…]

The Houston Report

This trip to Houston was a little different than the last one.  At the last one we were nervous and everything turned out as good as could be expected.  This time we weren’t nervous and we didn’t feel like it turned out quite as well. We didn’t get to see her GI doctor since she[…]