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.

Wednesday, July 7, 2010

Clapping and a wave!

We've been doing "If you're happy and you know it" for a while and Michael will clap your hands but not his own. This past week he's transitioning to clapping his own hands (and sometimes will clap when you tell him "clap, clap, clap". Very cool and you can tell he is proud of his accomplishment. While these are very small steps, they are huge for us as it shows he is able to follow instruction and repeat the action. We all take this stuff for granted but your mind it doing a lot when you do stuff as simple as clapping. Also, Michael waved good-bye to Ms. Denise and Connor yesterday. Of course we all over did it, but it warms our hearts that our friends and our kids friends are rooting for Michael just as much as we are.  I think he has only done that once or twice before on "cue". Again, very cool stuff. I have to say it again, bit by bit he is getting better!

Friday, June 25, 2010

Michael Update 6-25-10

Michael had a great doctor appt yesterday. Looks like in about 4 weeks we will stop the remaining anti-virus and begin to wean him off the remaining anti-seizure medication. The docs were encouraged by his progress and 82 days being seizure free. We will also begin a few other immune system and cell rebuilding supplements but nothing prescription. He will also transition to a B-12/B-6 cream vs. the daily shots. All in all, good report. Michael appears to be gaining momentum on learning too. He is interacting with his brothers more and they seem to enjoy that too. Matthew for sure loves picking on Michael and carrying him around. At 45lbs, no easy feat for a 6 year old. Bit by Bit!!

Saturday, June 19, 2010

My Friend Bailey

While I know this blog is for Michael I needed an outlet.

Today I lost a good friend, my 10 1/2 year old Chocolate Lab "Bailey". While in the last few months she had started showing her age a bit, limping when she got up, not as much energy, I was not expecting her to be gone so soon. Today was unexpected and a bit surreal. This afternoon she began having shortness of breath and soon after, things went from bad to worse. I knew she was dying so I was with her on her bed when she passed. It was like talking to a person, I knew she was struggling to breathe and that her time was near and I told her it was "OK to go" and "we would be OK, it was OK". It was though she was waiting for permission. I was starting to cry and while crying I told her "you are the best dog I've ever had" and she took two more breathes and she was gone. What a moment. I cried hard for a while and just stayed there with her for a long time. She would have done the same for me.

She was simply the best dog I have ever owned and may ever own. She was a great, loyal friend. She ran with me (up to 10 miles in her younger days), hunted with me (dove or quail...she would go down holes and into cactus patches after quail if they were only wounded and getting away....and she would get them!), and was just happy hanging out with me. Even in the front yard when other dogs would walk by, she would just look up, she never ran to them or bolted. Simply happy to be with me doing whatever I was doing. She met me at the door everyday when I got home, even when I would get home late and everyone else was asleep, and she would lay in the office when I worked late (sometimes till 1 or so) until I was finished, then she would go to bed. If I put on a camo shirt or wrangler jeans, she knew I was not going to work and would be doing something she would like and she would get all fired up. It was great. All she wanted to do was be around me and make me happy. As "man's best friend" she showed me unconditional love, everyday.

My friend Blake gave me Bailey as a Christmas gift in December 1999. His dog Stolie was the daddy of a litter of puppies and his "fee" was the pick of the litter which he gave to me. Susan and I picked Bailey. Like many newlyweds who use a puppy as a "test" before kids, Bailey too would prove to be the training ground for our future kiddos. I taught her all the commands and how to retrieve for hunting. She did great. Susan and I loved Bailey. With no kids in the house at the time, she was our kid. When kids did come along for us, Bailey was right there too. She was great with all the kids and very tolerant. She always gave them plenty of latitude, especially in their toddler years. She was really great with Michael and seemed to know he needed the most tolerance. At times, when Bailey was pushed to the max, she would just get up and go in the other room (or to her bed). She was a great first pet for the kids.

I have many stories about Bailey from trail running with her to South Texas hunting trips to having her clean up after each meal from our kids (or me) spilling stuff on the floor to just hanging out or fetching her favorite rope toy, but I will not include them here. Just know she was the best dog for me and we were blessed she came into our life. I will miss her...I already do.

I would like to thank Blake for giving us Bailey. Giving a newlywed couple a puppy could have been bad as she could have been a lemon. She was not, she was a diamond and the best gift.

Johnny, thanks for coming over tonight. You knew Susan was out of town so you coming over was much appreciated.

Well, I feel a bit better now, I could write about Bailey for hours but lucky for you I'm done.

Wednesday, June 16, 2010

Reason for naming blog "Bit by Bit"

Just in case you were wondering, the reason for the blog name is not related to horse bits but for a song that was pre-loaded onto a Digital MP3 Boombox for kids that Susan bought for Michael several years back. The first song pre-loaded was a song called "Bit by Bit" by Hot Buttered Rum and Orange Sherbet (yes this is the band's name). The song was so fitting that while Michael was going through all this I coined the song as Michael's theme song. Susan used the name for the blog as the song still rings true (probably rings true for us all). I was hoping to attach the MP3 here but have been able to figure out how. It is late and I am giving up for now. You can go to the I-tunes Store and search "orange sherbet and hot buttered rum", the Campfire Sing Along album should pop up and "Bit by Bit" is song #5 or you can go to and this will bring you to the same album under a different site. The actual song is 3:10 but the sample is probably 15 seconds but you will get the flavor. The song is spot on for Michael..... "Bit by bit I'm getting better, little by little I'm moving right along; piece by piece I'm putting it together, learning how to sing my song".

Tuesday, June 15, 2010

Michael's Progress 6-15-10

Craig here. Susan gave me permission to post to this blog from my own computer so hopefully I will be able to make more frequent entries.

We are now on day 65+ of no seizures. It is so wonderful that we've basically lost track of the days seizure free. I for one though remain cautiously optimistic. Given what we were lead to believe from the original doctors, what Michael is experiencing is miraculous. During this time frame we initially weened him from Clonzapane (which was an addictive anti-seizure medication); then, over about 5 weeks, weened him down to 1/2 the Banzel he was originally taking (another anti-seizure med) . Last week (per doctor's instructions) we stopped one of the anti-virus medications. Other than 1.5 pills of Banzel/day (vs. 3) and one anti-virus med (vs. 2) Michael is not taking any other prescription meds (other than supplements, B-12 and vitamins). I still give him a B-12/B-6 shot every morning and he takes it with NO fuss. He sometimes laughs when I stick him like "it that all you got". I realize he should mad as hell about getting shots every morning in the booty but I can tell you his attitude, for whatever reason, makes my job much easier. He also has ALWAYS taking his meds like a champ and for that we are very grateful. So in summary, no seizure and taking very little medications. Michael is rockin'!

It is weird, it is though he never had seizures and it is like that entire chapter never happened. I hope that book, chapter, whatever, stays closed forever. Wondering what Michael's and our lives would be like today and maybe forever if we had not met Dr. Stewart and his crew a mere 9 months ago. These thoughts makes me almost cry. We are so blessed and Michael, in light of what he has and is going through, is also very blessed. I cannot tell you how many folks tell me they are still praying for Michael. Keep 'em coming!

Michael makes cognitive improvements everyday. Though hard to tell and he does ebb and flow, overall he is certainly improving. He does things he never could before, plays with certain toys appropriately (or at all) that he glossed over before, interacts with his brothers (and they in turn interact with him...very cool to watch). Matthew should be careful though as he has a tendency to play rough with Michael and at 42 lbs, Michael is catching up fast and I am afraid that before too long he will be able to whip Matthew (or at least push him around) . I keep warning Matthew but he does not listen. He may learn the hard way sooner than later.

As a result of Michael's progress, we've gone from watching him 90% of the time to watching him maybe 50-60% of the time. Boy what a difference this makes. He was constantly on the go, climbing on the counters, sitting in the sink turning on the water (drenching himself in the process), hanging from the stair banister, turning on the water in the tub then leaving, pulling stuff off shelves and furniture, etc. This was constant. If he was not sleeping or in his high chair secure, he was on the move and needed adult supervision. He has not climbed on the counters in weeks (YEAH!). He still is on the move but more calmly, more purposefully and without so much collateral damage. We just need to make sure he is in the house or the backyard and we are good! While his cognition is getting better, he stills does not talk or listen or understand about leaving the house, the street is a dangerous place, drinking the neighbor's water fountain water is disgusting and he still has little fear so we are still vigilant.

Michael's focus, awareness, listening and eye contact improves everyday. He is such a happy little boy. He has a great laugh that went MIA while he was having seizures. It is SOOO nice to hear him laugh. He as the best belly laugh. You can now tickle him and he will laugh (I just to tickle him and got nothing (very depressing)). He also sometimes laughs when I sing to him. I know I stink as a singer but to hear him laugh it is worth my embarrassment to sing to him.

Please know he still has a long way to go but he is headed in the right direction. While is not yet talking and I cannot tell if he understand much yet, I keep waiting for him to say "Dad, I'm hungry, I want some pizza" or something. In addition to some of the examples above, he is now opening doors he could never figure out how to open. We had installed a keyed lock on our pantry but he now knows that he can turn the key and then use his other hand to open the door. This is all great (though we had to hide the pretzels (one of his favorites)). He goes into the backyard about 50 times a day and enjoys being outside and playing. He still keeps to himself most of the time but has routine and things he enjoys out there like climbing up the slide and sliding down, flipping over our hammock and picking up sticks and touching them to the ground. To us he is just being a boy in the backyard and it is great. He and I spent some time the other day sitting in the grass and pushing the ball back and forth. It was awesome and he was having fun and seemed to understand what we were doing.

All of Michael's progress has made everyone's lives much easier. Looking back we were on constant alert and that heightened sense of protection and caring and related stress was probably harder on us all than we knew at the time. I guess you just prepare yourself for the long haul and deal with it as it comes but looking back, it sucked and was tiring and stressful (especially for least I could go to work, she was always at work and on call for Michael 24X7). Today is still tough but to a much lesser degree. I think Susan would certainly second this. We've been able to come up for air and I know Michael has to be relived too. I wonder what he thinks about?

Before the seizures stopped we rarely went out to eat as a family, we took the other boys out of extracurricular activities (no basketball, baseball or soccer) we were just solely focused on Michael and getting him any assistance and help we could find. Everything else which was "extra" was put on the back burner. I hope that John and Matthew did not realize they were getting slighted (they certainly never said anything. It just was and we all rolled with it. Susan and I made efforts to spend time with John and Matthew together and individually as much as possible. Movies, bike rides, working the cows or riding horses, swimming or running to the store just to name a few. They also got really good quality time with their Grandma and their Nana and each got a few special trips to New Mexico or the ranches. It all works itself out I guess. God must have a plan!

Until next time, thanks for reading this far down and thank you for caring about Michael.

Thursday, June 10, 2010

Starting summer school

Michael is starting summer school this week and will go everyday from 8:30-11:30.  My sweet friend Courtney told me about the Children's Autism Center and although Michael has not been diagnosed with autism it is a wonderful program for all kids with developmental delays.  The center is in Round Rock so it is close to home.  He will receive three hours a day of one on one ABA/Verbal Behavior Therapy and we are so looking forward to the progress.  On a sad note, Michael's PPCD teacher and her aide have decided to move to kindergarten.  Although my teacher side understands about needing a change when you are teaching, my mommy side is totally devastated.  Mackie and Jana are the best and we will miss them terribly.  We can only pray that they will find another wonderfully caring teacher for the kiddos.  Michael continues to go to speech/OT on Tuesday and Thursday.  We love Kristin, Jennifer and Tara and appreciate all they do.  It has been a great summer so far.

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.