I made the call yesterday morning to find out the results of Kylie's EEG. You know, where you just leave a message with all the necessary information and then request to have the results and to please call back. You really just want to say, please call me back within 5 minutes, or I'm gonna lose it until then, because I obviously won't be able to function or focus on much of anything until you call me back...or something like that :)
We had a girl from the language study Kylie is in come by for an observation, so that was able to keep me distracted for a little bit. Though I will say like 2 minutes into her getting starting watching us and tallying Kylie's words that my phone rang. Ughh...just when my heart starts to hold its breath, I see that it is just CVS calling to tell me my prescriptions are ready. Really, not now CVS. Then a bit after that it was the dentist calling to remind Matt of his appointment....it would work way better if they just called him and not me.
Back to the language study. I can say that after the 20 or 30 minute observation was complete, we moved onto the girl showing Kylie some large flash cards, you know the real deal...not the animated picture versions we have. She was checking to see how many Kylie knew. And then my phone rang, and it was them.
I ran upstairs with pen and paper ready. I told nurse Jaimie that I was anxiously awaiting the results. Then she said it.. Kylie's EEG results are normal. She said it looks like you indicated lots of blinking during the EEG and none of that was consistant with any type of seizure activity. There was no seizure activity found. I am still a bit emotional about it just thinking about it. That is the biggest weight lifted from my heart.
Right before I called this morning, I prayed and told God that I know none of this is for me, and that I needed to give it all to Him. How hard it is to do that when all we want to do is protect our kids and want nothing but the best for them...happy, healthy and safe....that is what I always pray for Kylie.
So yeah, I just closed my eyes when she said the results, and I think it took a moment for my mind and heart to register what she just said. This has been tough to say the least. So, so many kids that have gone through IS and gain seizure freedom often have relapses and seizures return, it can be days, weeks, months, or even years later. And not just have the seizures return, but loss of skill and just overall regression.
So to have this EEG and have those results be normal was a dream...a dream that we can still live out for Kylie, that we are making it, we are some of the few, but also so grateful for how far we have all come in this crazy journey called life....life with IS. I know we will likely have more scares down the road...it's all part of it, but for now we are simply enjoying what we have at this moment and watching this amazing girl just soar!
*One of her favorite things to do...jump on the coach cushions after we toss them all on the floor.
No comments:
Post a Comment