Our astoundingly faithful God has Rescued Ruby AGAIN!!!

Dr. Shafron told me years ago that he cares what the tests show but he REALLY cares what the mom says even if they differ from the test results! He actually said that studies have been done of “CT scans vs. Moms and it’s a wash”! 

So moms – advocate for your kids!  God has given us HIS wisdom with our kids. In Ruby’s case, every head/shunt test to begin with looked “normal” but I was insistent – it’s her head. “Something is going on and even though the tests look ‘normal’, it’s her head.”

So the briefest version I can think (ha! When am I ever brief? I love to write!)…Ruby has been throwing up randomly for a couple of months…but in February it started to be more often, until the last two weeks she was throwing up multiple times a day and throughout the night.

Suddenly last Saturday night (3/9) I noticed her eyes “sundowning”…my heart raced! I had not seen her do that for over 10 years – so I knew there must be a problem in her head. Sunday I didn’t notice the sundowning but Monday, I took her to our beloved pediatrician because of the constant vomiting and her eyes were now acting wonky. Our doc confirmed that Ruby had lost 4 pounds in 8 days and she was concerned about her eyes!! She told me I had to take her to the ER. So Ruby and I headed there to try to figure out what was wrong.

It’s a long story, which if you want to hear I will give you my cell (ha!) of fiercely advocating for my girl. The entire week here in the hospital she continued to vomit every couple of hours and was completely, 100% lethargic. I kept telling the other specialists on her case, “It’s her head, she does not want to sit up and has made zero attempt to sit up….it’s her head!”

Finally(!) Thursday night, after all other possibilities were exhausted, Dr. Shafron’s team came in and tapped her shunt. Jubilee and Elizabeth were helping to hold her as I was watching it be tapped. The needle was slowly inserted into her “shunt bubble” and fluid was drawn off and instantly she began to attempt to sit up! I shouted, “SEE!! It’s her head/shunt! She has not tried to sit up the entire week! The problem is her head/shunt!” I was giddy that the Lord had made it so clear at that moment!

Of course the CT and shunt series of her head and shunt had looked “normal”. After the fist tapping a sedated MRI with contrast was ordered and another shunt series. Again, both looked normal.

Next it was decided to tap the shunt again but this time to shoot dye in and then take her for another CT to see where the dye was going. This time it was clear, a LARGE cyst was no longer communicating with the shunt.

Ruby has multi-loculated hydrocephalus…she has OVER 14 pockets of water in her precious head…Dr. Shafron had done 3 surgeries back when she first came home to fenestrate all the large cysts of water he could reach which then allows them to communicate with one shunt….But now it showed that the very large cyst in the center of her forehead although not changed in size had not taken in any of the dye.

Yesterday afternoon, my precious friend Audre had come to spend the day with me and Dr. Shafron showed Audre and I her CT scan and the large place that had not received the dye (it was so obvious on the CT) and meant it was no longer communicating with the shunt…he explained to us what he would do and how mathematically (literally with pencil and paper) he would have to figure the angle, etc…and then he showed us how he would go in with the probe, etc, It was truly fascinating!

The surgery was set for 5pm yesterday, 3/15/2024…but a serious emergency came up that Dr. Shafron had to take care of in the OR…which only meant more time for more people to be praying! He would decide if he would do it after the emergency or in the AM…

Suddenly our nurse flew in the room and said, “Dr. Shafron called for transport, Ruby is heading to the OR!” I prayed with my precious miracle girl, entrusting her to the God who had protected, preserved and rescued her over and over. And before long, it was time.

Dr. Shafron came out to the waiting late last night and said that she had done well, he fenestrated through the cyst and checked every part of the shunt and it was indeed working fine. But now that large front and center cyst would be able to communicate with the shunt.

Well dear friends, the first thing this morning our astoundingly faithful God confirmed it – Ruby-girl, my wee-BFF wanted to sit up! As she tugged on me sleeping beside her I jumped out from beside her shouting praises to the King of Kings – He had Rescued Ruby again! With IVs in both arms, she needed a bit of help so I gave her some tiny assistance to steady her and up she went! The pictures show it all – OUR GOD IS SO ASTOUNDINGLY FAITHFUL and, yes, I was shouting, praising and causing a raucous up here on the 8th floor!

In fact wherever you live, go to the window…(siblings in Seattle, Alabama, Colorado, Uganda, Phoenix) as well as friends and family in Ch*na, Italy, Wales, UK, all across Canada, Mexico, New Zealand, Australia and it appears it’s close to every state in the Union…

You can probably hear this silver-haired mama shouting praise to the King of Kings…I am weepy with joy and, yes, I have been literally jumping up and down!  God is truly at work and He is sooo good. Praise Him with me!

PS…

Thank you sooo much for praying! Please don’t stop. She looks amazing, but she has much healing to do, she’s whimpering a bit because her head hurts. There is also another serious health situation going on with her, which I will share soon…so please don’t stop praying for total healing for her…

You, my dear friends, are her army of prayer warriors…I’ve told everyone that Ruby is deeply loved around the world and there is an army of prayer warriors praying for our miracle-girl! Ruby and her mommy love you all so very much and again, if I could hug every one of you, I surely would! And I’m pretty sure then my hug-tank would be filled…well maybe not, but it would be a beautiful start!! xoxo