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A Ruby Update – Sunday 3/10/19

Realizing that many stop by Our Place Called Simplicity but aren’t on Facebook, I wanted to write about our precious Ruby-girl.

Friday night I wrote an urgent plea on my Facebook page asking for prayer and I updated throughout the night as my heart’s desire was to get Ruby’s “prayer team” praying around the world cause frankly the fear Dw and I were feeling was very real.  Truthfully being a special needs mom and dad with treasures that are medically fragile does not mean that we are made of steel and it’s “all in a day’s work”.  Definitely not!  We are very human with real emotions and feelings and we know up close what being a mommy and daddy to fragile kids can mean!

Ruby’s grand mal seizures have been termed by her neurologist as “life-threatening”…meaning exactly that.  Up until Friday night, Ruby had been seizure-free for FOUR years!   So that seizure took us all by surprise and was kinda’ devastating to my soul actually.  She has rocked life these last four years accomplishing things no one would have ever guessed were possible – like escaping out our front door which, in case you missed it, I wrote about right here (complete with a video of the escape).  After that initial seizure she went on and had two more.  One occurred shortly after a rescue med had been administered for the first seizure.  It was one terrifying moment after another and once each seizure began they just wouldn’t stop – it would look like they were slowing down, but it would just get revved up again.   

So in the dark of the night, as the siren on the ambulance blared toward Phoenix Children’s I was pleading and praying.  Her seizure had been horrible. With the siren filling our neighborhood I received a text from Graham who had heard the siren and knew it was the ambulance carrying Ruby and I.  Graham and Savannah and Winston were on the way to stay with the kids so Dw could follow the ambulance down.  Graham texted, “Give Rubs a kiss from Guh-Guh when you can.”  Graham’s adoration for his medically fragile baby sister is immeasurable. He’s the only sibling she has made up a  name for:  “Guh-Guh” and she grins from ear to ear when he’s over…patiently waiting for him to gently poke her in the belly and ever-so-sweetly say, “Hey Ruby.”  Then she wiggles and smiles with delight! Oh the joy he brings her!

As we rode to the hospital I asked the Lord to use us to share His love with the world around us from the EMTs to the hospital staff, praying that our miracle girl’s story would somehow touch the hearts that we encountered.  And as always, Ruby has made quite an impression!  This morning our night nurse came in with the new day nurse and whispered, “Ruby’s going to be your favorite – just watch and see.”  I have shared her story with many and there’s no doubt you can’t meet Ruby and not see her infinite value and the power of our healing God!

So here we are – Ruby and I – on the 8th floor at Phoenix Children’s listening to worship music together where we watched our church’s LIVE service. Dw and I are trusting that our astoundingly faithful God is working on our little miracle girl’s behalf.  The many tests since we have been here have revealed a change in her brain with things that are complicated because of her multi-loculated hydrocephalus.  There is a possibility that another brain surgery (she’s already had 5) will be necessitated or it might be a “go home and let’s wait, watch and see”.   

To know that prayers are being lifted from around the world for Ruby means more than you all could ever imagine and that’s why I couldn’t get on and ask for prayer fast enough.  The situation was very serious – anytime Ruby has seizures it is!  In spite of it all,   Ruby slept well last night curled against mommy and I slept well all things considered.  I love having her curled up against me – it’s kinda’ like a pacifier – bringing such comfort knowing she is safe.  For now we ask for continued prayers that God would give our beloved neurosurgeon, Dr. Shafron, much wisdom as we come up with a plan given the situation and the test results.  We may even be able to go home today.  I will say that she has made me laugh multiple times this morning and my heart leapt!  I told many of the medical staff  since being in here,  “I’ve never done anything good enough to deserve to be Ruby’s mommy.”  She is such a gift to all who value her!

Thank you precious friends for treasuring our gift with us…and for lifting her name before the throne of grace.   I will update when I know more!

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Lastly, for those who didn’t see the FB updates it looked like this:

Friday 3/8/2019 – 11:06 PM – If you’re awake….please pray. Ruby’s had a terribly long seizure (after 4 years seizure-free) and is having a rough time. EMTs called ambulance and when it gets here we are on our way to PCH. Please, please, please pray!

Updated 2:13am AZ time. 
Thank you and Please continue to pray. Even after the rescue meds she just had another. She’s having a very difficult time. They will do an MRI soon and I will (as always) go in the tube with her.

UPDATED: 6:33am AZ Time
Moved upstairs to a room while the docs attempt to figure out what’s going on. They are also wondering why, after four years without, is she suddenly having seizures. A lot of tears and a lot of worship music. He is always, always faithful. Once up in our room I looked out the window and here’s what our view is:

And this is where I am camping. MY hope is in Christ and Christ alone. He is Ruby’s provider, comfort, protector and none of this took Him by surprise. He has a plan and it is for good. We will use this time to tell everyone of Gods great love for the orphan and all the miraculous things He has done.#dwellinHope

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SATURDAY UPDATE 2:01PM Thank you so much for praying. So Ruby’s had 3 seizures and lots of tests. On the MRI they found a change in her precious brain and are wondering if that is connected with the sudden onset of seizures. Her beloved neurosurgeon has a major family event today so we won’t talk to him till tomorrow when we will see what he thinks and if surgery will be needed. We will at least be here till tomorrow or even Monday AND IF Ruby needs brain surgery – then a lot longer. But he may choose to wait and watch. Not sure please just keep praying.

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Our Ruby-girl – a continual picture of joy!  (From Ruby’s 8th birthday last year but always one of my favorites!)   

 

 

 

4 thoughts on “A Ruby Update – Sunday 3/10/19

  1. Praying, Linny! Thank you for sharing and reminding us even in the ambulance we can share His love! You are such an encouragement even in your requests for prayer. Much love from FL

  2. Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand.’ Isaiah 41:10 believing Gods best for sweet Ruby. Standing with you in FAITH. We walk by FAITH; not by sight.

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