So where are we at? This is what we know so far:
* She is still having funky episodes and we are trying to figure out what they are.
* Her heart is stable right now. Her pulmonary valve is slowly failing and there is more 'gunk' (scar tissue) in her pulmoary artery than they would like to see....but the doctors have said that it is best to wait as long as we can before repairing any of it because the older she is the better she would do with the surgery or heart cath.
* It is still possible that the episodes are seizures. Her sleep deprived EEG came back showing normal brain waves (Yippee!) which makes her case less urgent. We will meet with a Neurologist in a few months to figure out what next steps need to be taken. They are switching to electronic files right now so we are still waiting to hear when her appointment is.
* We are trying her on some reflux medicine as a shot in the dark....maybe it is reflux? She has a great appetite and eats pretty much everything including lots of spicy foods so the doctor is not sure that this is it but it is another thing to rule out!
* As she is getting older and more verbal she can now tell me when it happens. She tells me "My chest hurts Mama." while patting right ontop of her sweet scar. Then about 30 seconds later that "It feels all better."....and I keep praying for some kind of answer.
* We meet with the doctor again next week to keep figuring it all out! I would love to find something difinitive but also know that in some ways it is a gift to daily be reminded that my children are in God's care far before they are in mine and His is SO much better.
* She is a giggly, cuddly bunch of joy who comes running to me about a billion times a day with her arms stretched out saying, "I love you Sooooo much!".....and I feel so beyond blessed to be her Mama.
Thanks for all of your prayers. It is funny how much a part of daily life it all is now. God has been so gracious in giving us peace in the midst of the unknown. We are trying hard to keep our eyes fixed on Him!
The heavens declare the glory of God;
the skies proclaim the work of his hands.
Day after day they pour forth speech;
night after night they reveal knowledge.
They have no speech, they use no words;
no sound is heard from them.
Yet their voice[b] goes out into all the earth,
their words to the ends of the world.
In the heavens God has pitched a tent for the sun.
It is like a bridegroom coming out of his chamber,
like a champion rejoicing to run his course.
It rises at one end of the heavens
and makes its circuit to the other;
nothing is deprived of its warmth.