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Update on the Girls

February 20, 2019

It’s been a while since I’ve updated our village on the girls.  Not too much to report- which is a good thing.  For the most part, they are pretty stable.  The biggest issues we’ve been dealing with are behavior related with Cecilia.  We’ve been trying out different dosages of a few different medications to keep her regulated, in control, and unagressive.  These changes started back in November, and the balance that we have found to work the best for behavior has some hormone level increases which are not desirable, so we are still trying to find the right balance, and working with psychiatry has been somewhat challenging.  One thing we do know, is that she absolutely must be on medications for behavior.  And, we are thankful for that option.  

 

Coming up next month, Cecilia will be having a sleep study with an EEG done.  Sleep has gotten progressively worse for her, especially with medication dosages changing.  They will be checking for a whole list of things, and checking to make sure she’s not having seizures in her sleep.

 

Starting last month, both girls have started therapy 3-4 days a week.  They are both in therapeutic horseback riding classes, and they love it.  It has already proven to be great for thought processing, core strength, and posture.  They both have OT and PT, and Cecilia has speech therapy as well.  A huge blessing with OT, PT, and ST, is that the therapists come to our home to work with the girls.  And thanks to so many of you- our sensory gym basement is an incredible space for this work.  

 

 

We also wanted to say a great big THANK YOU to all who supported the Goodr Sunglasses fundraiser!  It was a great success and so many of you are super styling now.  Keep an eye out for more fundraising opportunities happening soon.  We are looking for volunteers to help with an upcoming event.  If you are interested, please contact Beth at raresisters.batten@gmail.com.

 

 

 

 

  

 

 

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