Childhood epileptic encephalopathy (Lennox-Gastaut syndrome [LGS]) is a rare and debilitating form of childhood-onset epilepsy. The syndrome is characterized by frequent seizures and multiple seizure types, a resistance to medications or therapies, regression, and an abnormal EEG with generalized slow spike-and-wave discharges. LGS constitutes between 1-4% of pediatric epilepsies and typically appears between the second and sixth year of life.

Friday, May 14, 2010

May 14th Update-Playing Tag

This is Craig here, Susan showed me how to post on this blog.  This is my first official blog post ever so I guess I am now hip and cool. Humor me please.

Today, Michael is going on 34 or 35 days, seizure free (nice to lose count). He is a new little man.  Given all he has tolerated over these past 2 years from EEG's, MRI's, shots (which I give him every day), pills, liquid meds, special diets, etc. we are glad to see him catching a break (which we hope becomes permanent).  He has proven to be such a trooper and tough as nails throughout this process.   Makes me almost cry writing this knowing what he's been through and how it has impacted so many lives.     It is nice to know so many people care so much about Susan, John, Michael, Matthew and me.  Overwhelming at times!  I second Susan's thank you's to all our friends, family, to the folks at IDM Partners and Wild Basin Investments (who've been extremely flexible in my work schedule so Susan and I could deal with Michael, great to have a supportive employer through something like this), and to Michael's teachers at Council Oak Pre-school and the folks at Old Town Elementary, especially Mackie and Janna.  Thanks to everyone.  You will never know how much your prayers and support means to us and what good work you've done or allowed in Michael's improvement.

Over the past month, Michael's attention, focus, awareness, smile, laugh and overall cognition has shown huge improvement.  While there are still mountains to move (and we are moving them), he is getting better everyday.  Yesterday the boys and I were playing tag in the front yard running from tree to tree as "base" and Michael was running, laughing and playing tag too as best he could.  Other than retrieving him from the street a bunch of times (he does not realize he could get run over out there and when you catch him, spank his bottom, look him in the face and tell him "no street" he just laughs and smiles, cute but not good).  Point here was we were all playing and it was great!  Later Michael got mad at me.  Maybe for the first time ever! He cried and screamed.  It was AWESOME!   Though I am used to this with John and Matthew, having Michael mad at me was cool.

Please know we are on the front row of witnessing a miracle.  World class doctors from here in Austin and Houston told us Michael was in for a rough and tough road and that LGS is not only drug resistant but is at times regressive.  Michael has and it bucking that trend thanks to his attitude and to his angel on earth, Dr. Stewart and his team. 

Though we realize Michael has a ways to go and is certainly substantially delayed, the joy and relief of no seizures for a while and seeing more of a sparkle in Michael's eyes gives us all hope that bit by bit he is getting better.


Terri T. said...

35 Days! Whaaa Whooo!!!
What a wonderful milestone, Craig.
Glad to hear the good news.
Best to you and Susan and your family.
Terri T.

Lisa Calbeck said...

I am overjoyed that you guys are seeing huge improvements and starting to move those mountains. Any move in the right direction at all I'm sure gives you all the hope it takes to keep you all moving forward! I can't wait to see what happens next :)

Meagan said...

Michael is so blessed to have you have you two as parents.
I'm over joyed to hear that he is making such progress. What a miracle for all of you. It's a nightmare of a battle, but don't ever give up. EVER.
Love you!


mbc said...

I'll remind you that you were once glad Michael was mad at you! :-)