Tuesday, November 17, 2009

An ever present help in time of need!!

Really trusting this promise tonight. As you know Luke's docs in St. Louis started him on a new med about two and a half weeks ago now. In addition to the new med, they increased his Topamax dosage quite a bit too.
For the last.....4, maybe 5 days, it's been very evident that Luke is having more seizures and not less. Could it really be, I keep asking myself. Am I just imagining this? Could the medicine that's supposed to be helping him actually be making him worse?
Couldn't get this thought out of my mind this evening as I've watched little Luke seize so much the last few days. Put a call in to St. Louis about 10 minutes ago. Thankful that Luke's doctor was actually the doctor on call tonight. Calmly I said, "Am I just crazy or could this medicine be doing the exact opposite of what we need it to do?" "Mmhhh." She says. "Never heard of that".
The paperwork that came with the Topamax says, "Contact your doctor immediately if your seizures get worse". So, I'm thinking it's happened at least once before for them to put the warning on there.
Her answer was "I'll look into it."
Our docs are GREAT. They truly are. They are just so finite in their wisdom. And, unfortunately the only answer right now is.... try this drug and if it doesn't work, wean off of it and try another drug and if that doesn't work, try another...and on and on the vicious cycle goes. The next one we try will be drug #4, and well....we're just not getting anywhere.

I hesitate to type out the same two words, PLEASE PRAY!!! I know you're praying your hearts out. But...please pray!

I hung up the phone, grabbed my mom's hand and put my other hand on Luke and asked God again for the impossible. Trusting tonight that my God will be just that...An EVER PRESENT help in times of trouble. And feeling really grateful that His answer is never, "mmmh...I'll have to look into that."

Will keep you posted. Thank you for praying.


  1. Praying as always, in tears, because I am a mom & it is terrifying not to be able to control what is going on with your child. I understand that feeling. We will continue to lift all of you up. Thank you for sharing your story, as often as you do. God is GREAT!!! He knows what is going on & HE will make it right. I agree with your statement about His answer - that has got to be frustrating. Will pray & pray & pray! That's what friends do. Will ask my friends to continue to pray as well.

  2. Dear Kristi,
    It's been many years since we have seen each other, but you are near and dear to my heart just the same. Jeff and I have just recently learned of the struggles Luke is facing and have been praying for you during our morning devotional time. One of the toughest lessons I have learned is that God does not promise us that life will be easy (or fair!), just that He will always be there for us....you are certaintly experiencing this in your life!! We are comforted in knowing that God knows all things and cares deeply for our children. We will continue to lift your family up in prayer, that God would sustain both you and Andrew as you face each new day.
    Hugs to you and your precious babies!
    Terra (Peretti) Patrick

  3. Wish I could have been there to pray & cry with you!!

  4. Trying to subscribe .... that's all!



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