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 so have I.  So, whenever I’m warm, I know she’s miserable.  We learned the hard way that heat is a real problem watching her face get flushed, her grow lethargic, unwilling to eat much, even her favorite foods,  and even, on occasion, vomit.  Not fun.  She’s also taken to biting and hitting in frustration.  Mostly me.  But that doesn’t make it better.  I’m constantly terrified that she’s going to bite someone else, mostly because she doesn’t just bite, she locks her jaw and you have to pry open her mouth with your hand.

But while the first day was brutal, the next two days were a blast.

We spent two straight days jockeying between swimming and air conditioning which, from what I can tell, is really all there is to do in Palm Springs.

palm springs We went with our favorite travel companions, Leslie, Eric and their 2 year old son, Ollie.   They’re just doing what friends do by dragging us along on these adventures, and it’s appreciated more than we can show while we’re with them.    Ollie, just learning to speak himself, is great with Maggie and wants to play with her regardless of how many times she rebuffs his efforts.  And Leslie and Eric have always been quick to get down to Maggie’s level, give her a good hard squeeze to give her some sensory input, and speak a little slower than normal so Maggie can follow along.  It shows that they’ve read up on Rett and are doing everything they can for her.   And it’s obvious how much Maggie appreciates it.  No matter how overheated she may be.


Leave a Reply

Your email address will not be published.