Kate

Hello All, sorry it's been so terribly long since I've given an update on Kate. I just haven't had it in me. But I know many of you desire to keep up with what is going on so you can pray and for that I am so grateful.

As you know, we have been dealing with seizures and developmental delays for two years now. We have not been able to get much information from our doctors and medicines have been largely unhelpful, though she is currently having seizures only while sleeping to the best of our knowledge. We are greatful for this! However, our best guess (our doctor agrees) is that it is these sleep time seizures which are causing all of her developmental difficulties. Kate has made almost no developmental progress in the two years since her seizures began. This is very discouraging.

Most recently, we took her up to The University of NC at Chapel Hill to be evaluated by a pedicatric epileptologist. While we weren't able to get any definitive knowledge at this time he had many ideas of what could be going on as well as tests that can be done.

He would like to rule out any metabolic conditions first (such as a vitamin deficieancy.) He indicated that a metabolic condition would be treatable and so it is good to test for those first. They have to do a spinal tap to find this out. We will go back at the end of March for that. Kate will be under sedation for it, but I am still nervous. It also seems too good to be true that all of this could be caused by something fixable. I want to pray and hope for this, but at the same time I find myself wanting to protect my heart from getting too excited.

If the spinal fluid comes back normal, then it will be time to do further genetic testing. Here is where it gets scary. You may remember that awhile back I posted about our concern that Kate has Rett Syndrome. Our current neurologist here in Charlotte ruled that out we thought but, Dr. Tennison (the Chapel Hill doctor) didn't seem to think this was the case. Kate did have quite a bit of genetic testing so I am hoping she was fully tested for Rett and he just missed it. We shall see. A genetic condition would not be treatable, we could only try and manage the symptoms (more on this should it become necessary.) For now, please be praying that we do not have to put Rett Syndrome back on the table.

There is also the possibility that Kate has both Autism and Epilepsy. That can be hard to tease out, but hopefully we can get clarity on that with all the testing coming up in the next couple of months. This will be much easier to do if we could get her seizures completely under control.

So, I hope that is helpful to you all. If you have any questions please feel free to leave them in the comments, send me a FB message, or email.

A note on our hearts. This trial has proven to be so much longer and harder then David and I could have thought when it all began. Often, I get caught up in the day to day of life and having Kate the way she is seems "normal" in a way. Then, it'll hit me, wow, this is a huge deal. This is very serious.

If I am honest, I most often am selfish in only thinking of how this affects me. Of how it makes my life harder. David is so much less selfish, thinking of how this affects Kate. There are also times though when I realize how our world, broken by sin, is wreaking its havoc on my little girl.

And yet, in it all, God is teaching us. I don't understand fully what he is doing, or why it must be done this way. I have come to see that I don't understand a lot about God. I know he is going to continue to teach me as I press in. I look forward to walking more closely with him. There is much in my heart and I can't hope to express it all here right now. But I want to acknowledge what he is doing. I want to acknowledge that his grace is truly proving sufficient.

I will try and update when we know more. Thank you for continuing to pray.