Update

Truth is I would love to fast forward through this part of my life and not even take a single picture or post a single word about what has been our life lately. I would love to never remember any of it... but in the same breath I think of the good that I has come from this trial...and that is what I want to remember; the lessons learned. After all that is why we are here, right? If we don't learn from our trials what is the point? So I am going to try to blog more...I am going to try to document the tender mercies, the miracles, and the joy we have felt through this wretched awful time. I am going to make the best of it! But a proper disclaimer would be it will most likely not always be positive!

So by way of update...we have had a few good days. I needed them desperately. I was at the bottom. Heavenly Father new it. He has blessed me with a few good days. We made the most of those days. We have been on bike rides, worked in the garden, and went to the movies. It has been good.

Since last post things have gotten worse. This thing called Epilepsy is the scariest monster I have ever witnessed. Quinn's seizures morph from one week to the next. He has several different types of seizures. The scariest is the grand mal. This is the type where he is unconscious and convulsing. There are times when he can't come out of the grand mal so we have a special emergency medication to help bring him out. We have had to do this 2 times.

Then he has little seizures called myoclonic. These are little jerks that can cause him to fall down or drop what ever he is holding in his hands. Then there are seizures called atonic where he looses all muscle tone in his body and he just falls limp. Those are scary because he can hurt himself pretty bad. Then there is the Absent seizure; this is where he just stares off into blank space and sometimes his little lip will quiver or his eyes will twitch. This past week we have seen an incredible amount of absent seizures- like almost every minute of the day. Those days are really really hard because he is only coherent like 20 percent of the time.

So.... the big question is what do we do? I wish with all of my heart there was an answer. Unfortunately it is not that easy. We have tried a different medicine (which I believe made the seizures worse) but we haven't seen much improvement. The Dr's are near impossible to talk to. I will send an email and hear a response a week later. A week is an eternity these days. You can't just call up and schedule a doctor appt you have to be referred by the doctor...who is unavailable. It is the most lonely scary road I have ever been down. Adam and I decided to try something new.

My gut is telling me Quinn is not going to respond to the traditional anti seizure medicine. His body is just too little and the side effects of the medicine are sometimes worse than the seizures not to mention seizures can actually be a side effect of an anti seizure medicine...i know right?

I was nervous and skeptical to go to a new doctor but one of the first things he told us was..."No one just starts having seizures for no reason at all. There has to be something that is causing the seizures and it is my job to find out what." That was really comforting. I finally feel like I have someone on my side who really wants to solve this problem. We took Quinn up to Primary Children's to have some blood drawn to start testing all different kinds of levels in his little body. We should have a plan from this new doctor in the next few days. I am anxious to know what the results are.

Hopefully we will have a better update within a few days...

As soon as I get the camera out I will post some pictures of the good that is going on around here!