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Thursday, November 8, 2012

Strength and Weakness

Gabriel turned 15!  He is a prophet, evangelist, and truth seeker and speaker.  When he was 4 years old he told me I was making an idol out of a book we had lost when I was tearing up the house looking for it.  He said, "Remember where your heart is, there is your treasure Mom.  Don't make finding this book an idol in your life."  He is passionate about living his God-given life to the fullest and he uses his strength to help the weak.

Esther is still not real particular where she naps.  Her sleep cycle could be described as "erratic."

I was supernaturally provided with the opportunity to attend a retreat.  Being led beside some still waters always restores my soul!

Homeschooling looks a lot like legos for the little boys most days.  

Bath beards are part of Esther's curriculum.....

We went to the most beautiful, God-infused wedding last weekend.  Dominic assured me he only went to weddings for the cake and I should not take this as a sign that he himself would ever get married.

Antonio, and all the siblings, continue to keep Esther vertical and moving.  Physical therapists have nothing on these guys!

Our overflow bed continues to have nighttime visitors....

And our daytime snacks continue to draw a crowd.

It was no small miracle to get neurology, cardiology, and ENT to coordinate their tests under the same sedation for Miss Esther.  Her hearing test came back good, but her MRI revealed a surprise.  Esther has a mass of arteries and veins right by her brain stem that are connected and communicating abnormally (an AVM in a really poor location, really deep within the brain and right by a  very"touchy" area) and she is at a high risk of a massive hemorrhage at any time.  Where blood should be going to her brain it is being shunted back to her heart (hence the heart murmur they thought they were hearing).  The neurologist (who had never seen anything quite this extensive) thought consulting with neurosurgery would be lunacy as the area of the brain this is located in would be too risky for surgery.  She had us consult with interventional radiology and their recommendation was to do multiple procedures to try to sever these connections in increments.  However the risks of stroke, aneurysm, and death from the procedures are nearly as great as doing nothing.  Soooooo....this whole "is the treatment worse than the problem" question is very familiar, i.e. Miss Blessing, who nearly lost her life while undergoing all her invasive interventions.  

I am so thankful that God is bigger, more powerful,  and wiser than I can fathom.  Brad and I prayed about our decisions regarding the treatments for our kiddos with health issues, and even when things would appear to go south for a season, we never played that "coulda-woulda-shoulda" losing game.  So we are waiting for peace about the next step for Miss Esther.  Right now weeks on end in the hospital, difficult recoveries, for a less-than certain outcome doesn't seem super appealing.  We are leaning toward a second opinion and more prayer at this point.  

Peace is always available because Jesus never leaves us alone.  We can make our joy conditional on circumstances....but why?  There is a different Kingdom, far above the kingdoms of this world, which is characterized by righteousness, peace, and joy in the Holy Spirit.  Where King Jesus reigns and His love is the currency.  That's where my citizenship is and that's where my hope is.  


Debbie said...

Praying with you!!!!

MARY B. said...

I've been following along since Ester's fundraiser...I'm inspired by your pep and self-care with such a big pep is more of a pip :).
I'm sure you've thought of this but no risk is sharing it...have you thought of Dr. Ben Carson for a second opinion? We've been inspired by him when we studied about him last year and since my daughter was born at Johns Hopkins we feel a connection...weak connection but meaningful to our daughter.
Prayers, Mary B

"Are These Kids All Yours?" said...

Praying with you....diagnosis are so very hard because we know OUR HEALER! And nothing is impossible with HIM! Yet we want to be real and know options. Praying with you and for you as you allow God to direct your path!!

Michelle said...

We will be praying!

Deb said...

Prayers surround you as you lean on the Lord to direct your paths... He will show you the way... and be with you every moment. Loves to each of you dear family!

Jenn said...

Praying for your sweet Esther and for continued peace as you follow the Holy Spirit's lead!

Jackie Dutcher said...

We are praying for you and Queen Esther!!! I've known about Dr. Ben Carson for years, read his books, watched his DVD's. My friends daughter was very ill and I suggested she go to him. She had a Dr. already. A few years later she called, my daughter is doing great, Dr. Carson did the surgery. My friend is a Neorosurgeon and friends with Dr. Carson. My friend is not peds though. Love you and praying!!!