Thursday, January 10, 2013

Persistent Vegatative State/ Pondering in my heart

Selah has been diagnosed in a persistent vegatative state (PVS) by the doctors here and was diagnosed in a minimally conscious state (MCS) by the doctors in NY.  There is some difference in the two terms with MCS being better. It is still a coma state but not quite a coma.  From what I read the patiets are still judged on the coma scale for the various testing models.  Some would say  a person in either state is not in a coma per se some would say the person still is to some degree....

If you read about either state, you will know that Selah is not expected to "come out" of this state.  Basically a person has about a 6 month window to recover and if not, then it is highly unlikely....  Selah is almost at 5 months.....

There are times my heart breaks in a way I didn't know it could break.  We went from no hope of her surviving to no hope of Selah coming back to us.  She has progressed some, but I'm not stupid and I'm not a person who doesn't believe doctors either.  Doctors make diagnoses based on what they and others have seen and usually they are right or close to right in their diagnoses.  I'm not one of those foolish people who are always going around saying "Whose report will you believe?  I will believe the report of the Lord"  I do believe the report of the Lord BUT only if God has given me a report to believe.....   the prophet Isaiah in Is 53 is telling the people a prophecy/God's words to them...The scripture actually reads:  

Isaiah 53

New International Version (NIV)
53 Who has believed our message (or report)
and to whom has the arm of the Lord been revealed?
2 He grew up before him like a tender shoot,
and like a root out of dry ground.
He had no beauty or majesty to attract us to him,
nothing in his appearance that we should desire him.
3 He was despised and rejected by mankind,
a man of suffering, and familiar with pain.
Like one from whom people hide their faces
he was despised, and we held him in low esteem.
4 Surely he took up our pain
and bore our suffering,
yet we considered him punished by God,
stricken by him, and afflicted.
 
In the gospel of John that verse is fulfilled by Jesus' coming....  

John 12:38

New King James Version (NKJV)
38 that the word of Isaiah the prophet might be fulfilled, which he spoke:
“Lord, who has believed our report?
And to whom has the arm of the Lord been revealed
 

somehow the Pentecostals/Charismatics have made that Messianic prophecy into some type of "magical saying"  and as long as they say they believe "the report of the Lord" then things will be reversed in their lives....Um...so sorry, that is not even a little good theology!  It's not even quoting scripture correctly!  
 
So that was our little correct theology lesson for today....
 
So in saying all of that, I'm talking about acceptance of Life....I accept Life...
 
On the other hand, I had a vivid dream right after the accident.  I dreamed that Selah and I were home together alone.  It seemed that it was really bad weather outside.  It seemed that everyone was over at the church, maybe it was a Sunday morning.  Anyhow in my dream, Selah "woke up" "became herself again"  We were sitting in the living room area.  She was still a small girl and it did not seem like a lot of time had passed.  She was back cognitively in a way I understood her being Selah.  However she could not walk but of course that didn't bother me in the dream!  I don't know what that meant, if it meant anything more than an extensive of my hopes....I'm not claiming it was a dream that came from God, but we will know it was if that happens.  It does seem interesting that even if Selah recovered cognitively, she will need surgery on her knees/ankles in order to walk again.  At the time of the dream I had no idea of how her body would respond to the accident.  I've held onto that hope now for almost 5 months.
 
So I don't know what the days ahead hold, as you can tell I'm in a reflective mood.  Please pray for Selah and for our situation....I know so many of you are and we thank you for holding us all up to God!
 

10 comments:

  1. ((((Hugs))))))

    Please forgive me if this is a suggestion you've already gotten...I was talking to a friend whose son is on the autism spectrum and has celiac's. She talked about his diet and how if he accidentally gets gluten he must go off dairy for months--and either way it affects him neurologically. He's on fish oil and is familiar with Dr. Sears study.

    I couldn't help but think of Selah and wondered if she'd ever been tested for celiac's or if you'd ever tried a gluten free/dairy (casein) free diet. They sometimes use gluten as a binder in IVs for medication.

    My son "only" has food allergies but when he was about 2, he accidentally had a little dairy--and YES he had the WORST tantrums for days. Some doctors think the gut is like a second brain and so if it's damaged it affects the rest of the body neurologically.

    Anyway I know you're still questioning WHY Selah got worse after being transferred and I wonder if the 2 places have different protocols regarding food sensitivities/allergies where their IVs/food are concerned.

    I don't mean to trouble you. My heart wants answers for you and for your girl to be healed. I hope you take this in the spirit intended.

    Love to you all.

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  2. Praying mightily for Selah and for all of you. God bless!
    {{{{{Yvonne}}}}}

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  3. honestly most adopted kids from overseas have few allergys...there are many thoughts on why this is.... but she has never had any evidence of any stomach issues and ate everything,

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  4. Well, I hope the dream was from God!!!!!!! But whether it was or not, I will continue to pray with and for you and Selah and your whole family.

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  5. Yvonne, Selah is HEALING. The MRI showed HEALING. Brains don't HEAL. Brain damage is supposed to be a permanent thing. Dead tissue is DEAD. They're trying to judge Selah on a bell curve, trying to guess where she falls in the "average." Selah isn't average! They don't know how to label her. I don't know if you understand how insanely amazing brain HEALING is. They don't want to get your hopes up so they don't get sued.

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    1. To be honest, she sure doesn't look like she is healing nor is she progressing on any fronts at this time. What was seen was unusal I'm sure but believe me you couldn't tell from Selah's progress that there is anything going on. it is very discouraging

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    2. Go back and read your own blog posts, silly woman.

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    3. I have hope in God but I can tell you overall Selah is not really progressing. I have read alot and she is pretty bad off. I try and be balence overall with my hopes/fears but she shouldn't be regressed like she has...only time will tell but i don't doubt that she is in a PVS or a MC state she is certainly not consistant in her responses including her most basic ones like the eye threat test.....that is what is scary! that is a brain stem response....and she doesn't always have it

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    4. That rehab place must be absolutely repressive. Your updates from Strong's were full of hope and often even joy. Since returning to Florida you have all sounded so sad and hopeless. Selah has had so much upheaval in her little life lately, I would expect her to retreat.

      First the adoption, being taken from the only place she'd ever known and immersed in a foreign country with a strange language she doesn't know, boisterous siblings, and parents who insist on touching her. Getting settled into this new life and routine, finding out that maybe this isn't so bad after all, and then the Great Bad Thing, who knows what she remembers of it.

      The princess in the tower of Autism waking to find herself even more closed off than before, in another institution. But Mommy and Daddy are here, a touch of stability, and the people are nice. She finds a new window in her tower, peers out sometimes, gets settled in this new life and routine. She's progressing, she's comfortable, she's getting more confident.

      She's stuck on a plane with strangers. No Mommy or Daddy. You had no choice, but that doesn't matter to her, she can't comprehend that. She's flown to another institution. No Mommy or Daddy. Scary. Strangers. Strange place. Sick. Where is she? Why is she here? Where are Mommy and Daddy? She withdraws inside the tower, inside the safe, familiar walls of her Autism. It's the most comfortable place she has, the only place that hasn't changed.

      Mommy and Daddy are back! But, wait, Mommy and Daddy were gone. That means they can be gone. This is new. This all takes time to process. Is it safe to peek out the windows again, or not?

      Autie kids process things differently than the rest of us, and change affects them much more powerfully. It might take her months to feel "safe" at home again (meaning that she is HOME and not threatened with more shuffling from place to place). Sometimes it can take YEARS for an Autie to process through an issue. Ellie's favorite cat passed away seven years ago and she STILL asks "See Uly?"

      BUT, once you get her HOME, once she settles in again, once she relaxes, she'll be peeking out those tower windows again. She needs time to rebuild her trust - trust that life is stable, she is HOME, and no one is going to leave her.

      Don't make me mail you mustard seeds!

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