Call from the Neurologist

I got a call late today from our Neurologist ... (just in time.. I was about to call down there.).  He told us that after consulting with several Radiologists to look over Gia's MRI, they all seem to agree that it looks like the cortical malformation was the result of Cytomegalovirus - or CMV.   CMV is becoming very common - 80% of adults are infected with the virus.  Although it is common, it is most dangerous to babies born with mothers who are infected, or to people with severely weakened immune systems.

The Neurologist said that the damage done to her brain is most likely - no longer active, meaning it won't get any worse. The seizures she is having are coming from the part of the brain that was most affected.  The white spots on the MRI are, what he believes to be injury to the myelin tissues (done by the virus).  These are not causing the seizures.

He still wants to pass her MRI around to some other doctors to get their opinions, but this is what all those he's consulted with agree on.

Since there is no way to reverse the damage done to her brain, and no treatment for it - we can only treat the symptoms.  That is where we are at.   The neurologist will share this info. with our Pediatrician, who will most likely consult with us further on where to go from here.

We plan on researching ways to stimulate the health of her brain naturally... certain foods, supplements that may stop her seizures, and medication if those first attempts do not seem to help.  We see our (natural) family doc on Tuesday for his ideas and opinion.

From what we understand so far - the only danger is that her seizures, if they continue - might spread to other parts of the brain or become more frequent (if nothing is done to help stop them).  This is not certain... only a concern.  She may also have other learning or developmental difficulties to overcome in her life - (or maybe none).

I guess on the whole, I feel encouraged, sad and thankful.  I know we still have lots of questions to ask, and we may get new information that changes all of this.  For now I am thankful that my sweet little girl hopefully will not continue to have degenerative brain problems in the future.  I am hopeful that we are learning this early, and can work on ways to help her.  We have so many things to be thankful for - to live in a country with access to so many specialists and doctors is such a privilege.

We could use prayers for comfort and encouragement, too - as we continue to grieve over the realization of her condition.  God is walking with us through this, He is not surprised by this - and He will use it for good in His own (incredible) way.  He may choose to heal her completely - or to use this struggle in her/our lives to touch or bless others.  I want to continue to choose to trust him, even on days when I feel I'm sinking into sadness and discouragement.

My dear friend shared this passage with me today and I love the honesty of a person struggling to trust in the goodness of God despite severe trials.   Notice how many ups and downs there are in this psalm!

Psalm 42
¹ As the deer longs for streams of water,
      so I long for you, O God.
 ² I thirst for God, the living God.
      When can I go and stand before him?
 ³ Day and night I have only tears for food,
      while my enemies continually taunt me, saying,
      “Where is this God of yours?”
 ⁴ My heart is breaking
      as I remember how it used to be:
   I walked among the crowds of worshipers,
      leading a great procession to the house of God,
   singing for joy and giving thanks
      amid the sound of a great celebration!
 ⁵ Why am I discouraged?
      Why is my heart so sad?
   I will put my hope in God!
      I will praise him again—
      my Savior and  my God!
   Now I am deeply discouraged,
      but I will remember you—
   even from distant Mount Hermon, the source of the Jordan,
      from the land of Mount Mizar.
 ⁷ I hear the tumult of the raging seas
      as your waves and surging tides sweep over me.
 ⁸ But each day the Lord pours his unfailing love upon me,
      and through each night I sing his songs,
      praying to God who gives me life.
 ⁹ “O God my rock,” I cry,
      “Why have you forgotten me?
   Why must I wander around in grief,
      oppressed by my enemies?”
 ¹⁰ Their taunts break my bones.
      They scoff, “Where is this God of yours?”
 ¹¹ Why am I discouraged?
      Why is my heart so sad?
   I will put my hope in God!
      I will praise him again—
      my Savior and my God!


Jesus... my 'God who gives me life'... Thank you, God for life!!   I am reminded of what a miraculous gift our bodies, our health and life are!  What a gift from you to take each breath!  Help me to cherish each day that you give me.  To live in each moment with my children, family and friends.  I know I'll again feel overwhelmed... broken hearted...  forgotten .... discouraged...
Help me to remember that You are the one who saves ...help me to again put my hope in You, and to remember Your unfailing love.

Ok....  For this moment, at least - my heart is at rest.  So thankful to have Truth that anchors my soul.

We'll keep you all posted if anything new comes....
hugs and love,
Sarah