Monday, March 29, 2010

appt update

Mike has taken Marlee Anne to the library so I thought before I try to compose myself once again I would write this email. When I called home my sister asked if I could tell her how it went or would I rather send an email. It hit me it's easier to send an email cause ya'll don't have to understand my spoken word through the tears like she did.
I had visioned writing this email to ya'll saying woohoo it's great news the first neurologist that called us can't read. However that is not the case. He does know how to read & he read Abe's MRI report just fine. Dr. Flamini could not give us a time line. They do not know how fast it is progressing. He doesn't know of anything to slow or stop the progression.
As if that wasn't enough to handle for the day he went on to Abe's EEG. He has Lennox-Gastaut Syndrome. I so hoped he didn't but as his seizures continued to progress & not be able to be controlled I did wonder.  It's a difficult-to-treat form of childhood-onset epilepsy that most often appears between the second and sixth year of life, and is characterized by frequent seizures and different seizure types. Definitely not a diagnosis we wanted.
We will increase Abe's lamictal over the next 5 weeks. A week after that we will try to decrease his vigabatrin by 1/4. If he starts having those other seizures again we will put him right back on it. He is on so much seizure medication & it would be nice to get him off some if we can do it safely.
His EEG showed that he is having seizures all the time. So many so they couldn't count. When he is not having a seizure he is having some type of activity on both sides of his brain. That's the reason we very rarely catch a glimpse of a smile, babbling or anything else. Not much clear time. Working on overload most times even when he sleeps.
Michala's EEG did show the drop seizures. She recently started her period (I apologize if that is too much info for some of you but it's needed in case some of our seizure knowleagble friends think of something). Once she started it seemed to have a change in her seizures. That along with the lamictal increase. He increased her VNS output. Right now we will hold where we are with her & let her body tell us what she needs.
I hope that I covered most everything. I go from moments of anger where this wall comes up, to complete exhaustion and breaking. This being moldable by God stuff is exhausting! I guess it's me making it that way. I was hoping once the appt was over the stress would kind of go away. It's lingering. It's hard to go through this grieving of losing a part of our children each doctor appt.
Yesterday as we had pictures made with the bunnies Aunt Kim got for the kids I watched Abe with the bunny & wondered would this be his last picture with bunnies. Mike & I jumped in the picture with all four of them & I thought is this going to be our last family picture. I did that with Mary Elizabeth & with Michala. I am ready to be past this phase. I know though that I have to deal with it on my own time & get to that point.
Thanks so much for all the prayers & support & for standing in the gap for us!

1 comment:

Ann_Warren said...

Kelli I am so sorry I just got on my knees and bawld my eyes out and try to pray, I just hope God understood what I was saying!!! If I can ever do any thing for you no matter how big or small just ask and I am there for ya!!! I love you and just keep leaning on God He has your back!!!! I will continue to pray for you, Mike and the kids!!!!! Love ya!!!!