Thank you SO much to those who have checked in with me - I haven't posted in awhile and so many of you emailed or called to see if all was well.  Thank you. 

It's been a shakey week.  We've been at Children's the last two days tinkering with Cody's VNS settings.  He had a 4 minute seizure last night and a 2.5 minute one today.  He's lost a pound.  It's just been a week or so of struggling.  Life with him always ebbs and flows.  I don't think I've slept more than 3 hours a night for 2 weeks. 

I don't think there's any particular 'reason' that he's struggling - it just happens.  He's had no sign of cold or flu - he's just had tough seizure days - and very fussy days overall.

As I'm sure you can guess, when he struggles, the whole house struggles. 

I'm so grateful for Seattle Children's. It is such a pleasure to be there this morning and have the nurse tell me that she's consulted with his neurologist and his nutritionist.  Providers at Children's actually collaborate - what a blessing.  I know that today, Cody was on their minds and they are doing their best to figure him out.  As we all are. 

Please pray for sleep for him (and us.)  For seizures to stop.  For weight to gain.  For fussiness and distress to give way to peace and calm. 

I think the tide may be turning.  Today I experienced what I consider a miracle.  Cody rarely stays in any room other than the Living Room (aka 'his room') for long.  He passes thru each room, touches stuff, climbs on and off beds, in and out of chairs - opens and closes cupboards, and then he's off to return to his mainstay - his beloved living room (the home of his swings.)  Tonight after I put his jammies on though - he lingered in the nursery.  Casey walked in.  And Cody stayed.  I told Don to come in since it was such a rarity to have Cody out of his normal routine.  All four of us sat in the room on the floor - and Cody walked over to me and just leaned on me - put his head on top of my shoulder - and lingered.  Then he smiled and put his cheek to mine.  He crawled in my lap and stared at me.  He giggled again and stood up - bent over - and laid his head on top of mine.  I whispered, "Don....I'm in heaven."  We both soaked in the moment.  Cody was STILL.  He wasn't flailing, screaming, running, tormented.  He was just still and enjoying a quiet calm moment with me.  I'll never forget it.  He seemed so different in that moment - so clear eyed - so 'there.'  I'm used to having him near me for fleeting instances but this was about 15 minutes of direct contact with no stims, no crazies, no pulling my hair or biting me.  He just sat with me and looked at me. 

I'm learning a lesson from this life of ours....a grateful heart.  Yes this past week has stunk.  Yes it's so painful to watch him (seemingly) deteriorate.  But I had those 15 minutes.  And we have a great team of Doctors.  And we have an even Greater Physician who is worthy of our trust. 

I hope we are turning a corner.  His VNS was turned down and hopefully that may help with his irritibality (but not worsen his seizures.)  He ate well today.  He's alive - he giggled - he's now asleep peacefully. 

"Your peace shall flow as a river, and your joy shall overflow as a fountain, and My glory shall be poured out as the fragrant anointing oil upon all your other relationships.  For I do NOT intend to strip you of earthly ties and joys, but I long to have you give Me the center of your life that My blessing may flow out to the circumference. 

Lo, I wait to bless you.  I wait to give you of My fullness  I delight to do for you because I love you beyond your power to begin to know.  Only drop those things you grasp in your hand, and place your hands in Mine.  Only pull your eyes from those things you hold precious, and I will fill them with My glory.  Place in My hands those you hold dar.  Leave them in My keeping for so shall your heart be set free to seek Me without distraction.  For when I am to you more precious than all else; when I have become more real to you than all else; and when you love Me more than you love any other, then shall you know complete satisfaction."

From the book Come Away My Beloved by Frances Roberts

love, Shawna