Hello there.  I hope you all had a wonderful Thanksgiving.  We traveled to my mom's house in Gig Harbor and had a yummy dinner.  Cody had a birthday cupcake (which he couldn't eat so Casey obliged!) 

He opened up a cool present....

And he handled the outing fairly well although lots of seizures came our way.  He just HATES driving so the 1.5 hour drive was a scream-fest on the way down.  On the way back home he fell asleep for a bit, but then woke up and was awake until 2am.  That poor boy, any slight change in his daily pattern and his sleep suffers, his seizures suffer.........and we are all yawning fools for being up all night with him.  We pay such a huge price when we take him anywhere.  I get very overwhelmed at the holidays.  I feel like we barely keep this boat afloat in general....so when holidays are added on top of things with the travel, shopping, gathering...it's added expectations and stresses that just freak me out.  I'm trying this year to lay low and just try to enjoy the time with  our family because I just don't seem to be able to tackle much more than that.

Cody had 4 giant seizures today - I'm guessing it's from the immense lack of sleep last night from our car trip.  Poor little guy - it just breaks my heart.  One of the seiuzres happened at a Dr. appt. which was fortunate because it's a new Dr. for us and he got to see one up close and personal.  He will be our new primary care provider and he is the bomb!  He treated Cody in the hospital for our bout with swine flu and was just amazing.  So we're thrilled to be hooked up with him.

We discussed a lot about Cody's 5 days of seizure freedom.  Because this was the attending Dr. at the hospital - he saw firsthand that Cody had no seizures when he had swine flu.  We debated back and forth about whether it was the fever, the empty stomach, or the continuous motrin.  He said he has seen one other mito child who experienced the exact same thing:  Illness brings about seizure reduction.  He encouraged us to try the continuous feeds and really thought that could ease the digestive burden.  He was not a fan of TPN for Cody - he said he's seen lots and lots of trouble with TPN....in the form of infections, bacteria, etc.  So I fear I am looking down the barrel of attempting continuous feeds with Cody - which means a backpack on his back with a feed-pump in it.  Yikes.  I just have NO idea how this can work for us - this kid does somersaults all day!!! 

But the new formula is not helping with seizures at all - in fact they are worse than ever.  But I will say I still think we're going to stick with it because it does seem to be easier for him to process. 

On to lighter topics - we put up our Christmas tree today and Casey was thrilled!  He got so excited to see it again, that he raced out of his bath and straight into the kitchen just to stand next to it! 

Having a Veggie Tale Nativity Scene next to the tree is quite a draw for him, as you can see!  

That is our news for the day.  We hope this holiday weekend finds you all well!

with love,

Shawna