Little Miss Stiff

     It's been too long since I've shared, and for that I apologize.   Like living in the eye of the storm we have been going 900 miles an hour in many different directions.  Liberty's photography class is going very well and she is enjoying her new attendant. Liberty loves going to Amarillo College and loves all her people there.  

      In January, Liberty got her first increase of the muscle relaxer Baclofen in her pump.  Before the pump was placed she was taking 100 mg by mouth every day.    She is now taking 12 mcg through her pump into her spinal fluid.  The increases have to be small due to danger of overdosing. The good news is that her mind has cleared somewhat and she is more vocal.   The downside is that she recognizes pain more often and is unbelievably stiff.  So stiff that she gets bruises on the back of her legs as her body tries to conform to toilet seats and her wheel chair.  So stiff that her whole body is rigid most of the time.   

     Due to scheduling her pump surgery at Thanksgiving, Liberty has not had Botox since before school started.   The difference in her little body is huge.  We hoped that the pump would provide more immediate relief, but sadly, that has not been the case.   As her Parkinson's and Dystonia progress, the stiffness will intensify.  We are pushing against the tide that continues to attack her neurological systems.   Each Baclofen increase should get us closer to  a more relaxed body; we hope.  

       Very soon we go to see her doctors and will get another increase of Baclofen in her pump, have her Deep Brain Stimulator checked, and get Botox once again.    Praying that she get some relief as we have no plans to slow down.  As long as we can- we will keep going.   We are going to live this life to the very fullest we can!  

     Blessings to all!