Cody had at least 10 seizures overnight last night - all in the 1-2 minute range.  I didn't sleep a wink.  Between seizures, he tossed and turned from the top of the bed to the bottom.  I think my efforts to find him a nutritional supplement aren't agreeing with him.  They all contain some form of protein - either lactose free dairy - or soy - or rice protein, etc.  And they all upset his stomach.  I'm nearing the boiling point with regard to his weight gain - we just can't keep living this way.  He simply doesn't want to eat.  To force him makes him even more averse.  I've prepared every single food I can imagine over the last few months - offered everything - tried the opposite tact of just letting him come to the table whenever he wants (which is never.)  I've tried it all.  I've consulted with a gastroenterologist, 2 nutritionists, 5 online forums, a naturopath, a neurologist.  Eating 'more' isn't an option.  Adding 'supplements' isn't an option.  Adding 'more' nut butters, oils, etc. isn't an option because he's just not eating.  I want to tear my hair out.

And on top of this is the all-nighters that are killing me.  I got out of bed at 7:30am when Cody got up and Don took the boys so I could try to get some sleep finally.  But then I lose out on time with the boys, time at church.  Yesterday I had 2 precious hours alone with Casey and I was so tired I couldn't even stand up.  I just sat in a chair in the living room and watched him play - had him bring things to me - and was a heap of tired bones. 

So many fronts to battle.  Eating/weight loss.  Gastro pain/constipation/dysmotility.  Seizures.  Sleeplessness.  Chronic pain.  Manic sensory needs.  Vision issues.  It is an endless vacume of need and urgency every single day.  As of this weekend - we have been doing this 4 years.  Four years ago on Memorial Day weekend we began our week in the hospital where 'infantile spasms' was heard for the first time.  I can't tell you the swirl of emotions attached. 

We went to a group home yesterday to visit a member of our church named Skipper who is in a wheel chair - and it was his birthday yesterday.  He has cerebral palsy I think - is delayed - has hearing impairment - and needs total support.  Just to sit up in his wheelchair he is harnessed in around his chest and legs.  Someone has to lift him to get him into bed or on a toilet or in a bath.  He is a cheerful guy - bless his heart.  We brought balloons, cookies, and a T-shirt that said "Blessed is the man who loves the Lord."  I know he was thrilled that we came by.  But for me, it was also a study in the group home scenario.  Will Cody wind up in one someday?  There were people wandering around in a helmet, in wheelchairs, slumped over in their chair.  Is this where I could ever imagine my son - the apple of my eye?  Wandering aimlessly up and down the hall?  I know, people tell me 'don't go there.'  But you know what?  You have to.  We are saving money right now - for Cody's future.  We have to think of every angle.  We have to make sure we are provided for in our old age, plus that he's provided for the rest of his life.  That's a big ticket.  Sure it would be great if Casey every chose to take Cody in once we are too old, or gone.  But I would never expect that - or ask it obviously.  Hopefully Casey will have a family one day of his own and when Cody's over 6 feet tall - he may be a pretty scary adult given all of his issues.  So no....I would expect it would be more likely that Cody would wind up in a group home setting with visits from Casey and others.  And yes, it would be silly to dwell on that right now because it's years and years away - and with the degenerative nature of mito disease - it may not even be an issue.  But you DO think of it because it is out responsibility.  I would want the best place I could find - but even the 'not best' places cost a fortune.  So we save, we plan.  We still pray for Cody's miracle -- but when you visit a setting like Skipper's home yesterday - it is a stark reminder that time WILL pass.  There WILL be a day when I can no longer care for him.  And what then? 

Well, enough dismal talk.  I think I get a bit bleak when I don't sleep.  But on this 'diagnosis anniversary' weekend - you tend to think of the big picture.  What will become of my precious Cody?  Will he ever have more meaning to his life than just blowing raspberries all day and swinging?  Will I be changing his diapers when he's 20?  Or will this illness take him from us much more quickly?  All of the above is in God's control - and one more big lesson that I don't have any control.  But saying it's in God's hands doesn't change the daily living of it in some ways.  It's still our responsibility to work this out here on earth.  To save the money.  To go to the Dr's.  To try to enhance his life as much as we can. 

All that to say, please pray for 2 things if you feel so led:  weight gain and sleep. 

Blessings, Shawna