What a fantastic day!  Cody woke up with a smile and a giggle. Casey did the same.  Casey has this ritual of burying his warm, bald little head in my neck when he wakes up.  Then he'll raise his head up and grin a big toothy grin...bury his head again...raise his head again.  He does it about 5 times while he coos and chirps.  What a lovely life I lead.  Those moments will forever be burned in my memory.

Cody is doing so well right now.  He had 2 huge seizures this week but the rest have been small ones.  He's had tons of small ones but they are the kind that don't really interfere with his day - or his development.  Speaking of development - we have a beloved friend back - Dan is Cody's old speech teacher from the Kindering Center.  He agreed to come back on board after hearing Cody had lost most of the skills he'd gained under Dan's teaching.  Cody's had 5 speech pathologists in his life and Dan is the only one who creates these breakthroughs with Cody.  He really thinks outside the box plus he really knows Cody and has a history with him.  After a short time with Dan back on board - Cody has already improved so much!  Today i put a "communication board" across the room from him with a PEC photo of a granola bar on it.  I never said a word.  Never cued him.  And 15 times in a row Cody walked to the board, grabbed the photo, sought me out and handed it to me - and got a bite of a bar in reward.  I videotaped the whole thing.  He's also signing "open" and "all done" which is brand new.  This is just after 1.5 weeks of implementing Dan's advice.  Cody also has a new ABA therapist.  That's a type of teaching approach used with autistic kids.  She comes over 4 hours a week and works mostly through repetition and reward - although she thinks outside the box too and has a bunch of interesting methods to get Cody to latch onto things.  Many of you know I have been feeling desperate over Cody losing his ability to communicate with pictures.  He worked so hard to gain this skill and last December was able to pick photos, hand them to me, make requests, etc.  It really liberated him.  Now, he is pretty much floundering and has lost much of what he gained.  I've been battling the school district over this - trying to convince they he's gone backward but all I hear is "he's doing great!!!"  Dan confirmed that Cody has lost not only skills, but incentive and motivation to do PECS.  He also saw the frustration that Cody feels as a result.  So it feels so good to have a team in place to help him get back on track.  I have high hopes. 

One other great part of my day was meeting Michelle - a mom who lives nearby with a son that has infantile spasms.  Riley was just diagnosed...he's 6 months old.  She's living the same existence I did 2.5 years ago.  We decided to meet since we lived nearby -- and it was such a cool time.  He's on ACTH just like Cody was.  He's starting Vigabatrin just like Cody did.  Michelles fighting the same demons I did - "how do I fix my child?"  "How could this happen to my precious baby?" 

We had a nice, long chat about life, God, marriage, gratefullness....and although she said I encourage her....it is she who encourages me.  She makes me recall being in that dark place.  That place where I thought my life was over.  Where I couldn't see any light - only black.  Tears were my constant companion.  I was mad at God.  Mad at Don.  Mad at me.  It is amazing to meet with her - and to realize that I'm no longer in that dark place.  I was able to speak words of hope - of a bright future.  I have survived so much.  So will she.  And looking back, I see God's fingerprints all over the last 3 years.  I'm still wrestling a lot of it out with Him - the "whys" - but my relationship with Him is deep, it's complicated, it can be tumultous, but it's r-e-a-l.  He knows me and I know Him.  My marriage is not "just' intact - it is thriving.  In fact just today Don and I had a blessed moment together where both boys were sleeping.  We were eating lunch and I reminded him of our wedding day.  One of the cards we got said, "Shawna you've found your handsome prince - let the fairytale begin!"  We DIED laughing.  He said, "yep honey....living the life of luxury!  That's us!  The gravy train!"  We got the giggles non-stop.  Sitting there alone for probably the first time in months.  No sleep.  Seizures, poopy diapers, a messy house, no free time, no money......quite a fairytale!  hahaha.  We are a good team.  We both acknowledge quite fully that this is NOT what we bargained for.  But as a team, we approach it with humor, sometimes tears, a dose of sarcasm, a lot of faith......and we press on...together. 

Please pray for Riley and his family.  They are just embarking on this journey.  They will one day be able to laugh about it too but for now, it's a big scary battle.

with love,

Shawna