** Update at 8:19 a.m.**
Courtney's ammonia levels are rising agian. Twenty points in one day. Not good. Please pray we can figure out a way to stabilize these numbers.
Yes, it is a good morning...
How can that be when we are well into our second day in the Big House?
Well, because we are well into our second day...Courtney has turned a corner and she has decided to keep fighting.
So we will keep fighting.
There are moments in life that when you look back on them, you know the Holy Spirit was directing every single move. Wednesday night was one of those nights.
As Courtney's blood pressure dropped and I sang "You are My Sunshine" softly into her ear for the seventeen millionth time in her life, I let her go. I placed her in God's hands, again.
There comes a very deep peace with a decision like that. You would think that having made it many times before, it would be easier this time.
You would be wrong. Who wants to let their child go...ever...
Don't let my smile or generally easy demeanor (once I have slept for longer than 90 minutes at a stretch that is) fool you. This is hell. Unadulterated hell. To watch your child fight for every breath, to push through seizure after seizure is horrific. It's it's own form of Mama torture.
We do not let it go to waste. Every crisis, every seizure, every blood pressure drop, there is prayer. There is sacrifice. There is love.
Because that's what Courtney has taught us to do. To offer her suffering and ours for those who have no own to pray for them. We have met some of them here in this ward. Mama's with no support around them as their little ones fight through illness and recover from surgery. They are alone...
We have been blessed beyond measure...you surround us with love and prayer. You fight for our Courtney.
There are no words I can share that come close to describing how full my heart is.
We are not alone.
THAT is a miracle in itself.
The gates of mercy have opened before us and Courtney is doing better.
You all did that. She is laying here, kicking off her blankets and annoying the nurse when they try to change her diaper, smiling and even laughing once more because God heard your pleas and mine and said "She still has work to do."
Make no mistake my friends. I am not under any delusions that things are "back to normal" for Courtney. There will be many challenges ahead and many more moments of crisis before my girls journey is done.
God's got this...He holds my daughter close...He knows the plan...He sees the WHOLE picture and I trust Courtney to His care...now and always...
Life is a series of twists and turns. We are looking down a new street this morning not quite sure about what's at the end but trusting that God will take us by the hand one more time and show us the way.
I met with the doctors late last night and a new plan was revealed. They have begun to decrease the Depakote to try to lessen the toxicity in her liver. This will take approximately ten weeks.
We still need prayer. If her seizures show a dramatic increase we will have to stop and leave her on the Depakote. This will challenge her liver and kidneys. We are by no means out of the woods. But we shall fight another day.
Last night they tried to get a spinal tap done but were unsuccessful. So later this morning they will take her down to Radiology and try again. Please pray for her comfort and peace. This procedure is a tricky one with her complicated scoliosis.
But then it's Courtney we're talking about, everything is tricky.
Once the results of that are back and they are clear, and if she can handle her seizures without her blood pressure dropping significantly, then we can consider sending us home.
That sounds like heaven to me.
Last night my mother-law-called to check in. I put the phone up to Court's ear and my mother-in-law sang her favorite song.
Courtney smiled and hummed back...FOR THE FIRST TIME IN FOUR DAYS...
It is her miraculous gift to you...buck teeth and all.
We covet your prayers. We cherish your friendship and support.
We send you love from room C5303.
May today be a better day.
We have received many emails and phone calls asking how you can help our sweet girl. With this new round of hospitalizations and major changes in medications, there will be many medical bills to pay. After much prayer and on the advice of dear friends we have decided to place this Paypal button on the blog for now to allow those that feel called to assist our Courtney in this manner.
KNOW THAT YOUR PRAYERS ARE ENOUGH...MORE THAN ENOUGH!!
All of her other needs are being met. Through these donations we hope not have to take on further medical debt. We humbly thank you for your kindness.
Know that we appreciate all your prayers and practical help. We could not make this journey without so many walking with us in love.