Saturday, April 6, 2013

Muscle Biopsy and EEG's

    Christianna had a shorter seizure in late Dec.  Looking at it now I think she's had severe regression in her vision from this.  From this seizure we visited her Neuro and did an EEG in office that day which showed abnormal brain activity which...  wait for it. Wait for it. Is completely normal for folks with epilepsy.  So he also wanted to set up an MRI and since she had to be put under for that I decided to have him go ahead and order the muscle biopsy that we had postponed.
    On Feb. 5th, Mimi's birthday, we celebrated with an MRI and biopsy.  The biopsy is to detect a mitochondrial disease. We should get results back from different labs here in the next four months.
As of lately her physical therapist thinks she might be having drop seizures during PT so we have touch based with neuro and we are setting up a 72hr home EEG. FUN, At least we won't be living in a hospital for it, however we will keep her home from school as to not freak out the other little kiddies or chance the leads being tugged on. Heck thinking about it now I guess it means 72hrs of watching her and making sure that she doesn't tug them off! Ouch.  I do expect skin breakdown on her scalp as this happened before with a longer EEG.

A Kiss From Heaven

I saw this story in the Huffington Post fwd: to me by a dear friend.

So true!   I realized this many months ago and expressed it to a few, but not 
in the same words or with any conviction. Now I have the conviction and will 
try my hardest in low low times to remember it!  They are here to teach our 
crazy society, back to basics.  Love.  I had somehow..., come up with the idea that maybe the reason there seem to be so many special needs people is that this world needs them.  They don't wear their pants hanging off their butts.  They aren't  going to become hooked on meth.  If they grasp sex, they won't usually have sex without a real loving relationship.  A lot of them don't get the "bigger" things in life...  or do they?  Maybe it's the rest of us that are "special." 
They are genuinely happy souls.   Now this doesn't cover every special needs person, but someone like Christianna or her close friend with autism, yes.  
     About two months back during a religious education parent class on, "What the heck happens to us when we die", I came to the realization that people like Christianna are the only people currently walking this earth that will never commit a sin.  This sounds so little, but to me it is HUGE as I sin daily in one way or another! 
    Oh and this lovely, thank God he/she is in my life, friend also told me something that ended with the words something like (sorry bad memory on details but the point taken), "maybe your purpose is for other moms to look at you & see what grace moms like you have given your situation in life." Which translated in my head to those other mom's saying, "What do I have to be upset about with my child, how do I have the right to throw in the towel or lose it.  Look at her and how gracefully she goes through her life with a child like that to care for."  Also makes me try to remember to live up to this with outsiders at least, not those in my cabinet.  Y'all get the real ungraceful me!
The videos.


   The mother's name is Christiana!