Wednesday, June 3, 2009

Watching and Waiting

Watching and waiting is definitely what we have been doing a lot of lately. The first time I noticed something not quite right with little Kylie was April 14th...I haven't been able to take my eyes off of her for long since then.

It's a bit of a curse and blessing all wrapped together. A blessing for the obvious eagle eye, as Matt calls it, is what got Kylie a diagnosis and treatment so quickly. The curse because it is making me concerned about every little movement, and then afraid of what I may miss or overlook. Some people may think I am overreacting or whatever, but remember that if I wasn't this way, then Kylie would not have gotten treatment as quickly as she did. As her parents, we have to speak for her, and with something as serious as this, nothing can be left to chance...our baby's life is too precious. God made me this way for a reason...Kylie is the reason.

The not so fun part of about this ordeal..well, none of it is fun, but the most unfun part is that it is not over, and won't be over for a few years. The unknown is definitely the most difficult to deal with, but in our case we know what the unknown can be: Lennox Gastaut. You see, all parents worry about their children, and wonder what the future holds for them. The difference between us and parents of healthy children is that we know what could be, and it is scary.

This is not meant to be a post to report sad thoughts... this is the reality of what we are going through, of what we are dealing with right now, and what we need to be on the look out for. Is this mom and dad being more paranoid? Nope, we were told by Kylie's neurologist to look for anything unsusual, all sorts of different seizures, just anything out of the ordinary. Wow, that is a lot to be looking for, especially when babies do odd things, being first time parents...we are not totally sure what is normal, and there are so many different types of seizures to learn about and then to be on the look out for.

Matt called the neurologist on Wednesday, because I noticed Kylie staring off and not being responsive to me. I was concerned because this can be a type of seizure (absence seizure), where a person just stares off and is unresponsiveness. Our doctor gave us a couple websites to use as resources to teach us about the different seizures and what we should be looking for. Education is definitely one of the best things we can will help us know what is more or less concerning in regards to her behavior. The doc also mentioned doing another EEG once Kylie is off the meds (12 more shots to go..woohoo!!), and he can see how things are looking.

One thing I have always said is "be where you are." That is sometimes not so easy when where I am is watching and waiting. We are doing our best to enjoy every moment with our beautiful girl, but we must always be on watch for anything unusual and try not to disregard anything. Whew, tiring to say the least.

We are praying all the time for Him to heal Kylie and for renewed strength for us. This is a long journey that has only just begun. It has almost been misleading in some ways, because in the beginning it was a clear MRI that we were looking for, and it has continued on to better EEGs and the meds stopping the seizures. Those were huge steps, but the beginning of many more that we must endure. The nice part of those steps is they were in timeframes that seemed much more reasonable or at least easier to handle (hours, days, weeks). The big wait now is seeing how Kylie develops over the next few years. We have been traveling on the right path thus far, and hope and pray that it continues not only for the next few years until we are out of the woods, but for many years thereafter. The journey is not over, but beginning in some ways. We have God right by our side, so we will get through it...we just don't know how many stops we will take along the way.

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