Not a good day today

Today Cully is having more seizures than we have seen to date. And today we found out the scope of just what is happening to Cully. Not a simple epileptic child with autism but rather one with a horrible form of epilepsy that may very likely take away  most of his brain with these pathetic seizures we have to watch him go through. Today he is a smart boy with smiles singing along with songs and dancing in front of the television. He runs to me every day when I walk in the door and jumps into my arms. Today while at the doctors office I watched him kneel down to a little boy who he called "baby" and he took on the big brother job and showed the baby how the toy works. He talked baby talk to him and even gave him a hug. This is how my Cully is growing up. Learning to be a helper with lots of hugs to go around. This is my Cully today.  But if you read the numbers for this diagnoses then it is obvious that it will take over Cully and leave him a child with severe brain damage. If you think positive like everyone says then you realize that he might just pull through with minimal damage and he might be able to live a more normal life with special programs and groups that can help in his future. But regardless of what I follow the outcome will be what ever it will be and the Cully that I have will not be here any more. And he didn't do anything to deserve that.

Now with all the information laid out on the table Cully will begin taking what 24 hours ago was a dangerous disgusting drug but today it is now our only miracle drug.  Our best hope is that this will end his seizures. And that's all I can do for him.

I pulled all my tricks out of the bag today knocking on the doors of my clients, emails and phone calls in hopes that someone might have that magical connection to someone in neurology or epilepsy research. I don't have a very good track record of asking for favors but I sure did today. Everyone has been so kind in the offers of help but none were able to open a door to Cully and take him under their wing.

A call to the University of Michigan Neurology department lent us only the directions of a process to get Cully an appointment which will take near a month before we can even schedule. Papers must be mailed to us. Return papers with all collected medical records and wait for a review. Upon the outcome of the review we will be contacted and informed if Cully is accepted as a patient.   I don't know how much of Cully will be here in one month. So we started the process just the same and will continue with the only option we have at this point and take this drug. I just hope we are not missing something that could be helping Cully right now. In one month it may not be too late to learn of something but what might it have helped before then if damage is being done each day?

4 weeks ago he was just a hyper healthy little boy.