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.
http://www.huffingtonpost.com/paul-gondreau/dominics-gondreaus-special-vocation-to-show-people-how-to-love_b_3001103.html

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.
1.
http://religion.blogs.cnn.com/category/catholic-church/pope-francis/

2.
http://www.nydailynews.com/news/world/family-moved-tears-pope-francis-embraces-disabled-son-article-1.1308663?localLinksEnabled=false

  
   The mother's name is Christiana!

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.
Lin

Plumb - Need You Now (How many times)

Yes We Are Home!

Hopefully from now on.  We got home last night, Sat. around 6:15pm Cianna seemed fussy today, but I think this was because the pain meds were wearing off. Eating ok. via "Monkey Button" as her loving Auntie calls it.  It's been a day of rest.

That's tubular!

Cianna is having surgery today at 1:45 pm.  Mimi started to tell me about a "button" type of gTube, and I started to look it up, but was eating dinner and thought that might not me a good time to read about surgery. (I'm currently eating lunch, so I don't want to look it up now, either!)

Mimi stayed with Cianna at the hospital the past 2 nights so that Lin could stay home with Joey.  Before all of this happened, her original plan was to go back to NC today, but now she's going to stay until Friday.  I'm glad she's there to help Lin out, but it sucks that it's got to be at the hospital, instead of at home watching Baby Girl while Lin does laundry or get ready for her August garage sale!

At any rate, I'm sure we'll post more after Cianna gets "tubed"!

2:22 pm - Just got work that Cianna is out of surgery and the surgeon said all went well.  Lin and Joe are waiting to be allowed back to recovery room to see her.  I was surprised it went by so quickly and Mimi texted, "The monitor showing her "code" showed the surgery procedure began at 1:23 pm and now shows post-op at 2:07 pm."

Out 5/23 in 6/22

So we are playing the game for a third time.  At St. Vincent's this time. Sounds like Drs. are thinking that whatever is causing the seizures is also causing the regression VS. The seizures causing the regression.  We did a Midochondrial draw on Wed. and in six weeks we"ll see what those results are.  No intubation at this point seizing seems to have been stopped, and I figure we'll go ahead with a G-tube while we are here.