Monday, January 14, 2013

Where Life Has Taken Her Now

To start on a good note, School 114's Developmental preschool w/ Mrs. Lezly Dwyer!  This is where she was at today with her dearly devoted Daddy!   Who else gets to say, "I attended my first day of school with my Daddy there!"  

She was hand over hand assisted with scissors for the first time today!   She had 5 bites of sweet potatoes thickened up! Her teacher goes to our church.

Since June 2012 we have been BIG seizure free.  I think Cianna had a partial seizure about a month ago followed up by a pretty constant tremor of her left hand similar to an older persons hand tremoring. Dr. Pappas her Neuro doc wants to do another MRI which we are attempting to set up a muscle biopsy for mitochondrial disease at the same time since she will be under anesthesia for the MRI.  Now this is our second time to set up a muscle biopsy.  I pulled the plug on the last one because she seemed peaceful and non-regressive and not in the hospital.  However with the little ever so tiny twitches I am seeing now we are attempting it again. By the way the DNA test for mito. and POL-G test were both inconclusive and negative.  The exciting medical news is that we also did another EEG after her partial seizure and the doctor saw abnormal brainwaves.... which apparently is normal for epilepsy  folks. Oh boy!  She is now currently on three seizure meds. all via G-tube- I recommend everyone get one of these you can eat all the healthy yucky tasting stuff and meds. w/ out a blink of the eye! Dr. Pappas plans to wean her off of the Keppra eventually which scares Joe and I as the last wean is when we ended up in Riley for 2 weeks.  She has finally received her wheelchair as seen above. She is still currently not sitting up unassisted as well as all of the joyful milestones that come after that.  She is currently quite non-verbal with occasional hysterical laughs and random sounds.  We are with a new team of doctors now and are happy with their honest frankness and humble ego's.
   2012 was a hard year and I was quite happy to bring it to an end.  It was wonderful seeing God's hand in our life however I'd rather see him without all the heavy stuff involved. :)
Blessings to all of you.

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