Hi all, 

I'll start with the fun news about Mr. Casey!  

Casey has been minorly potty training this week!  And the fruits of our labor?  He went #1 AND #2 in his potty! 

Yay!  I'll spare you the graphic pictures - but here's the 'after' - he got an ice cream cone and a new book called "Uh Oh - Gotta Go!"  He is just SO easy in every way.  It amazes me.  He is always happy, sleeps perfectly, rarely disobeys, takes correction wonderfully, and has never had 1 reason to go to the Doctor!  We are now going through Bible Stories like Noah's Ark and he is latching on like crazy.  He LOVES church and today I let him dress himself so he wound up wearing a denim hat, sunglasses, shorts, a t-shirt and slippers with big monkeys on them.  I'm sure God appreciated his unique-ness!  :)

Cody had some fantastic news this week - he's gained 2 pounds since his surgery - that's 2 lbs. in 1.5 MONTHS!  We are thrilled not just for the weight gain - but thrilled to know he CAN gain weight which is something we weren't sure about.  This tells us he DOES absorb his food and process it enough to gain at least.  Sometimes with mito kids, they literally just can't abosorb nutrients and it is a constant battle to keep them healthy.  So that is 1 battle we won't fight. 

In every other way, this week has been a battle.  Saturday we were all excited to go to the "Mito Family Picnic" where we would meet other families close by whose children suffered from Cody's disease.  I really wanted to meet the parents, see the kids, talk to the Dr's.  So we were all showered (a rarity!) and the kids were all spiffed up - the diaper bags were packed, wagon was loaded, food was cooked and ready to go - and I'd even asked a friend to go with us to help manage the kids so we could meet everyone and chat a bit more freely.  Then, as we were about to walk out the door - Cody lurched into a 7 minute seizure.  Sigh.  What a disappointment.  It is at times like those - when something so good is thwarted by a seizure - that I get SO frustrated.  WHY couldn't we just have been able to go and be a part of something that was very significant for us?  But we unpacked, settled back in the house, and waited for Cody to recover from his rescue medicine.

We had our 6 month appt. with Cody's neuro Friday.  I'm getting a bit smarter about these appts.  I emailed him a history of the last year of seizures, changes in meds, and all other things significant (surgeries, sleep patterns, etc.)  I asked if he'd look it over before our meeting and included a few questions pertaining to the last year's events.  It was a good plan because going into this meeting I just launched into - 'did you have a chance to read my email?'  He said, 'yes I did' and we went from there productively.  Otherwise, the neuro walks in and says 'how is Cody doing?' and you stare at him blankly - winding up only giving him the most current news.  I find that I only have true perspective when I look at big chunks of time - and what his seizures have done within them.

That to say, we saw that Cody began having 'huge' seizures (5+ minutes) in March.  And now he averages a 7+ minute seizure about twice a week.  That's in addition to all the other seizures that are anywhere from 15 seconds on up.  We talked about his VNS, about meds, about sleep (or lack thereof.)  I won't bore you with all the details.  Really the only change was that he's started Cody on Zonegran to try to cut the length of the seizures.  He's been on Zonegran before.  But at this point you start cycling through the drugs a 2nd time.  We had no real answers for the gas pain - and no real reason for the seizures increasing in length. 

Cody's tolerating the Neocate formula although he's up every night even with this super digestable formula.  So we know his gas pain is NOT from food.  The nurse watched him for awhile and surmised that maybe the gas pain is from all the raspberries he blows and all the air he inhales doing so.

Who knows.

I am just so darn tired.  His granulation tissue is back so we're fighting that with a host of medications and ointments.  His feeds are getting harder as his faulty G-tube just doesn't stay in place well and we have to hold it down so he doesn't wiggle too much during the feeds.  And we're just heading into a new whirlwind of side effects from the zonegran. 

So there you go - some good news - some 'same old' news.  We battle on.  We trudge on.  We thank you for tuning in to this little story of ours.  We couldn't do it without ya!

with love,

Shawna