I need to write an update about K, but I keep starting and deleting it. Things are kind of exhausting right now and detailing it feels exhausting, too.
If you haven’t known us a long time, you probably don’t know about K’s history with these type of neuro episodes. You don’t know how they ruled our lives for several years of K’s early life; how hard they were on her little body and how we worried over her and were largely helpless to do anything for her. It was horrible to see her bright, shining personality get washed away by these things, to watch them steal motor functions from her, to listen to her cry and see her writhe in pain, to watch her wretch and vomit…for hours and hours. And there was little to nothing we could do for her. We never knew when they would strike and we never knew when they would end. We didn’t know why they happened and we didn’t know how to make them stop. When they went away, (shortly after she got her feeding tube) we felt absolute JOY and unparalleled relief at the defeat of that particular monster. But 8 years later, here we are again, face to face with our least favorite monster, the one we thought was vanquished long ago.
I keep saying, “I DON’T WANT TO DO THIS AGAIN.” petulantly because I don’t. I don’t want K to have to go through it again. At least last time she was young enough that she wasn’t really aware of it, not in a way that let her dread it or that crushed her when it ruined her plans or that changed the way she lives in the world. I don’t want her to endure the symptoms again. I don’t want to be spending most of my waking minutes trying to solve this mystery…again…desperately trying to find a way to slay the monster, for real this time. What happened? Why now? What has changed so much? What is similar between right now and 8-11 years ago? Are her brain lesions back? Why did they go away for so long? I don’t know that answers to any of it, but I go over it and over it in my head. Google searches bring up terms I haven’t thought about in years, but they bring me right back to those desperate moments. I’m never going to stop wanting to solve and fix this for her.
Yes, it has only happened once so far, but in our experience, these attacks do not fly solo. I would be extremely happy to be proven wrong about that this time, though! She has continued to have concerning symptoms since her hospital discharge, but they have not progressed into another episode, thankfully. Today we followed up with the pediatrician and her neuro exam was good. She’s being referred to a new neurologist, and there are orders for an MRI and EEG that will hopefully be scheduled soon. That’s the practical stuff. Medicine has changed a lot in 8 years, the science has advanced, so maybe there will be more specific answers this time or treatment options that actually help her!
So yes, we are back in the ocean and now there is a monster on our tail, and it is a little disheartening right now…but we’ve done this before, and we are stronger swimmers because of it. K has a great medical team now and hopefully, we’re going to defeat this monster once and for all sometime soon…or at least find a way to control it.
July 13, 2017 at 8:18 am
Continually in our thoughts and prayers
July 13, 2017 at 10:50 am
Kyla, you are a very caring and feeling mother and I know you have Faith with all you have been thru. Just keep praying my Dear that the Lord will give the Drs the answers to the questions and find a resolution to the eposides for Katie. I have her on my Prayer list and will continue to pray for you and your precious Katie……If you need anything don’t hestitate to let me know. If it is in my power I will do it.
July 13, 2017 at 5:25 pm
Kyla, you don’t know me, but I feel like I do know you and your family. Aline has posted so much since I was reconnected with my high school friends. I have signed up to follow the updates. Prayers are all I have to give you for now – no miracles in my pocket, just hope things will improve for Katie.
July 13, 2017 at 7:41 pm
Oh honey. Holding you all in the light.