Sunday, December 9, 2018

Wait and See

To all those who lifted us up in prayers on Friday night - thank you.

Little girl came home yesterday.

Unfortunately,when you give two rescue drugs on top of giving a massive dose of Phenobarbital in order to break up seizures.... you can just about guarantee that the seizures will stop for a while but the little girl will be a bit wrecked.

Well... not a bit wrecked.

She's a total mess.

Yesterday she couldn't find her feet to walk on them. Today her feet go in the opposite direction of where she wants to go.

She can't communicate because her words sound like complete gibberish.

Her fine motor skills are non-existent.

Her frustration level is through the roof.

Yesterday when she wasn't sleeping, she was screaming. 

This morning she isn't screaming but is angry and agitated. Sadly, her seizures are coming back.

And we are no closer to understanding why she is going downhill.

We left the hospital with med increases, pats on the back, ideas of things we could try in the future and a 'wait and see what the bloodwork shows up' bit of encouragement.

The wait and see is the hardest. We know she is tanking for a reason which makes the bloodwork so incredibly important. 

But all we can do is wait and see and hang in there with our little mess of a girl on this snowy Sunday.

In the meantime - I want to thank all those who donated to Ronald's grant account!!!

I drew names and here are the winners for my little mini-giveaway...

Sue H - you won the Amazon $100.00 gift card.

Susan B - you won the scarf.

Please contact me at so I can get your prizes to you!!!


  1. I don't know what happened on Friday, but it sounds like things are quite difficult for little Mary and you. I will be praying fervently for healing and answers and remedies. And for your faith and hope to stay strong and firm. You all are amazing. Love to you! Lord, be merciful.

  2. Heart breaking. Will they ever consider a surgical treatment or would it no help her type of seizures. It is so devastating that all your dietary work and meds are not stopping the seizures. Sending positive thoughts to your family.

  3. So sorry she has to go through this.

  4. I am so sorry that Mary is suffering so many side effects - it must be so scary and frustrating for her. When will the bloodwork results be available? Surely hope they'll provide some answers and that Mary's meds can be adjusted so she has a better quality of life.

    BTW, there must be two Susan B.s, as I didn't donate directly to little Ronald's account this - I did send a general Christmas season gift directly to RR recently, but asked that it be used for the greatest need, so unless RR decided to use it for Ronald - it wasn't me.

    Congratulations to the other Susan B., though!

    Susan(B) in Kentucky

  5. Oh, no, poor thing! That's not fair! I am so glad that she got a loving,caring family! Previously she was sick AND alone. Now she's not alone. In a certain sense you and Rob have halfed her problems so far. I am convienced you will be able to help her heal.
    I keep you guys in my prayers.

  6. Prayers for Mary, and all of you. I'm so sorry. And so very, very grateful that she is enduring this surrounded and covered with your family's devoted LOVE, and not alone. Hoping for answers and solutions with you, and all of Mary's fans. xo Kelly

  7. Sending so much love to you and your family, and hoping for some Christmas miracles for Mary Sasha.


Loving words from kind people make our hearts glad!