Sunday, April 19, 2009


Positive, encouraging...K-Looove! My church peeps know what that's all about. The K obviously stands for Kylie. Duh!

So Jody and I finally got to sleep last night a little before midnight. The crew that came in to check her vitals at four woke us both up. Four hours of sleep seemed like forty. Fortunately or unfortunately, we were both sleeping pretty soundly, so waking up from a deep slumber to our current place was difficult. I couldn't stop shaking until I started with this update to you all. It's so hard not to dwell on all the what-ifs. By the way, this is me, Matt, writing. Jody is doing an amazing job of lifting me up. She is awesome.

We saw our neurologist yesterday morning. He had some relatively encouraging things to say.

  • He thinks that based on her development - which is right on track - that she has the better of the two types of this. Without getting too detailed, we're hoping for the variety of Infantile Spasms that is not a symptom of an underlying condition.
  • We should know for sure on Monday when we get an MRI (scheduled for 7am). Please pray that everything comes back clean on Kylie's little head. That would mean the Stump family would probably get to go home later Monday or Tuesday.
  • Of course, we will be giving her the injection at scary...for the next week or so until we can get another EEG to see if the meds are working. If the meds are working is probably the most important of all.
  • The medicine she is on is actually a hormone that is naturally occuring throughout the body. She's just getting it in massive quantities. One of the downsides to the ACTH is that it compromises her immune system. So, what does that mean? We'll be locked up in the house for the next couple of weeks (once we get home). No visits from sick people or kids under 15, or going out in public places (church, grocery store, etc). Not kidding.
So, a few things to pray for:

1. A "clean" MRI on Monday

2. A reduction in the number of her episodes over the next few days which would mean the meds are doing what we want them to be doing...getting rid of this affliction. It sounds like this would also lead to a more encouraging EEG.

3. Lastly, please ask Him to shower Jody and I in his Grace, Love and Mercy. I suppose it is not for us to ask why this happened, but to accept it as His will and continue looking for the ways that He is here with us every step of the way, helping us through this trying time.

It might be kind of corny, but I keep thinking about the famous inspirational quote (Jody has it on a key chain for crying out loud)...I'm going to butcher it, but it goes something like this: a troubled sould sees only one set of footprints in the sand and asks God, "Where are you, why have you left?". God responds with "Dude, I've been here the whole time. Those footprints, those are mine as I carried you. You didn't see me at first because you were lost in your suffering." We can use all the reminding that He won't leave us to battle through this alone.

Since we're taking this one moment at a day at a time is too much to handle...we'll focus on loving on her all day today, Sunday. I know He rested on Sunday, but I hope the sheer volume of prayers regarding little miss Kylie will move Him to act in a swift and efficient manner and maybe work a little OT.

Here's a fun little snippet. Jody makes up songs to sing to Kylie - maybe to help her calm down when she's fussy or maybe just to sing. Either way, Kylie loves hearing Mom's singing. The last line to the original song Jody concocted is "Kylie Mae Stump gets lots and lots of love". We had no idea how much that really is true.

After getting roughly twenty minutes of sleep Friday night, the truck loads of visitors we saw throughout the day on Saturday did an amazing job of lifting both of us and derailing us from those dark, dark thoughts that continuously creep into your head at times like this. A huge thank you to everyone that has lifted up prayer, have come up to see us, called or emailed to offer their support . We cannot begin to express how much it means.

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