Our Ruby-Girl

Many of you have written and asked for an update on Ruby….so here goes…

First off, the pictures in this post were taken a few days ago – isn’t Ruby gorgeous?  Her smile radiates and her joy fills our home and from the pictures it’s clear, she’s back to her bubbly, lively, giddy self!!

So the skinny on how she is doing medically..

While in the hospital a resident had decided what her new dose of seizure meds should be.  The resident had said, “Let’s do XYZ”…and then on a subsequent visit to Ruby’s hospital room (when nothing had changed on Ruby’s end) had declared, “Actually I think we should change her dose to ABC!” which increased the dose significantly higher than XYZ.    It was kinda’ like, “Let’s use the yellow dishes for dinner…wait, I think we should use the flowered ones instead.”  Absolutely no rhyme or reason and so flippantly spoken.

Truthfully I was still reeling from the fact that Ruby had even had any seizures after being seizure-free for over four years and didn’t process the random very significant increase until Ruby was so cranky and sleepy that I thought, “Wait!! Why did the resident even do that?”

I had also noticed that the discharge papers from the ER (which the same resident had written) had a major discrepancy between the pages of what the rescue meds were to be “dialed in at” (pre-measured by the pharmacist).   Besides the discrepancy of two different doses of the rescue med, the resident had included in the plan a second dose of the higher dosed rescue med to be given if a seizure were still going three minutes into it. Since her seizures have been known to last 45 minutes, it’s almost a given that the second rescue med would be administered according to the resident’s discharge instructions.  This all seemed very scary in light of the fact that the rescue med is known to cause a person’s airway to shut down.

Putting a call into Ruby’s neurologist who has been treating her since 2012 and his thoughts? “That second dose is not what I would do at all, decrease immediately to XYZ and as for the rescue med? Do not give her a second dose, the risk to her airway closing is too great with a second dose on top of the first!”  Whew! I thank the Lord for the prompting to call and the wisdom her known neurologist brought to the situation.

So here’s the point of me sharing this part of the story…Moms!  When the Lord nudges you to question things – by all means – QUESTION!  We are the only advocate for our children and we all must be vigilant! Don’t ever worry about offending… at the end of the day – we are the only one left caring for our treasures!  We were entrusted by God as their protector, proponent and the champion of their health!  Don’t second guess yourself! Question away!  If a doctor gets snarky – it’s their problem and it’s usually a wee bit of pride that makes anyone defensive.  As a wise doctor/close friend once told me many years ago…”They call it a doctor’s ‘practice’ for a reason…we are all ‘practicing’ on our patients each day.”  Which drives the point home – QUESTION anything you feel uncomfortable with!

We will be meeting with her neurosurgeon to see what he thinks of the situation given the change in the MRI.  In the meantime we are soaking in every minute with our little miracle girl!

Now for a bit of humor…..a very typical Ruby story from this morning.  I wish I had had my cell phone out to record it because seriously friends, she is a hoot and each day (multiple times per day) she causes us to laugh hysterically.  This girl’s got “schpunk”!

This morning as Dw was getting ready to head to the office he kinda’ swept me in my arms and gave me a giant hug and a little peck.  I had been standing at the counter feeding Ruby who was sitting beside me in her wheelchair.  As he finished hugging me he turned hurriedly to  head to the front door while I said, “Hey Ruby’s wondering why you’re not saying good-bye to her?”  I know my Ruby and I knew she was indeed wondering.  He whirled around and turning to her he spoke, “Ruby, did I forget you?”  She looked up at him and gave him the biggest stink-eye ever.  Seriously, I am giggling thinking of her expression.  Dw and I both laughed heartily as her stink-eye literally spoke volumes, “Yes, I wanted a hug but you ignored me and now I am very annoyed that you had to be reminded…”  

So bending down to her he questioned, “Can daddy have a kiss?”  She turned away completely to the opposite side.  I couldn’t resist!  “Hey Ruby, can Mommy have a kiss?” to which she immediately glanced up and kissed me!  Dw and I were laughing.  Nehemiah was there and I asked, “Hey can Nehemiah have a kiss, Ruby?”  Nehemiah bent down and she kissed him instantly.  Dw asked again, “How about Daddy now?”  Nope.  She turned completely away.  “How about Jubilee?” we asked.  She leaned right over to give Jubilee a kiss.  We seriously could not stop laughing.  Daddy asked her one more time and once again she smirked and with a twinkle in her eye she turned the other way.  Seriously, she’s a blast!  And daddy probably won’t forget to give her a kiss when he’s leaving anytime soon.  Ha!

Although Ruby is deemed “non-verbal” she is the chattiest treasure we have and she and I “talk” all day long – seriously. It just takes pausing to “hear” her and she will chew your ear off.  The joy she brings to our home is indescribable and there is no doubt we are so thankful that God in His mercy and grace spared her life once again.  We truly couldn’t imagine our lives without her.

Thank you for your prayers as we continue to navigate Ruby’s “new normal” with the understanding that she is no longer “seizure free”.



5 thoughts on “Our Ruby-Girl

  1. I’m so glad she is better but I know it is scary knowing what could happen. Ruby has the greatest, most radiant smile!

  2. Good to read the update and smile at Ruby’s silliness!!! 😀 So adorable and thankful she’s home with you. Glad you contacted her regular Dr. Hugs and blessings!

  3. Hahahahaha that is great! “Hmph, I’ll teach Daddy to forget ME….” She’s a trip and I love her sense of humor. I remember when she kept knocking over Graham’s glass, and that’s how you started to figure out that she could see! And thank you for the medical update. So glad she is doing better!!! You’re absolutely right– we Mama Bears have got to speak up and question the doctors when things don’t seem right. They may be the experts in neurology (or whatever field) but WE are the experts in this *particular* child!

    (I recently had to fire a neurologist because, despite my son’s worsening balance and increasingly concerning gait issues, which PT and ortho agreed with me was a neuro issue–dude wouldn’t even watch him walk! Huh? What good is that? New neuro examined him thoroughly, agrees there is an issue and definitely not “just CP,” and is not leaving any stones unturned…she’s a keeper.)

    Hey speaking of neuro stuff–how is Autumn doing? We’re still praying for her!

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