Tuesday, November 29, 2011

Stanford - Part 2

Our house is a disaster area right now - at least in my view.

First, we pulled all the stuff out of Will's room so that his room could get painted. We're going from a "baby yellow" to a "big boy tan" along with new furniture and bedding. He barely fits in his crib these days.

Then dragged out all the Christmas stuff.

Then packing. I am an multi-day advanced packer. I like to start my list, make sure everything is clean, start packing, double check it, then add in a few more things I really don't need, then remove those things and so on... I know, it's pathetic, but hey, it's my process.

We're packing to head to the last portion of the Stanford study. The study requires you to come on Week 1 for baseline testing, then return on Week 13 for "post-drug" testing.

So our schedule for the week is:
Monday: work and school
Tuesday: painter and some other home repair things; packing
Wednesday: travel to California
Thursday: EKG & Echo on his heart in the morning; then anesthesia and a brain scan and skin biopsy in the afternoon
Friday: meet with Dr.Enns at 9 a.m. and then lab work
Saturday: travel home

The big deal here is the brain scan. During Week 1, it showed a dim picture of his brain, as it should have. The hope is that now having been on the drug for 13 weeks, it will show a brighter picture of the brain. Meaning, the drug is helping increase mitochondrial activity, therefore an increase in energy and so on.

Anecdotally, I can say that we've noticed a few big changes:
-he no longer walks pigeon toed, rather, his feet point straight ahead
-he can climb up and down stairs on his own
-his BMs have become more consistent and we don't have to use nearly as much Miralax
-his chewing is legit now, he can chew up most anything
-his vocal and pronunciation has improved - likely this goes hand in hand with the tone in his face for chewing.

Who knows if it's because of the drug or just Will working hard - or maybe both!!?! We'll find out.

We didn't leave much room this time for "fun" but I'm sure we'll venture into San Jose for dinner and some fun on Wednesday and Friday. Thursday will likely be a low key hard day for all of us.

The most exciting part for Neil and I is that we get five whole days in a row with Will. No work, no day care, just hanging with Will. Granted, the circumstances could be a little more ideal, but we'll take it.

I'm selfish, I want every minute that I can get and I want to give Will as normal of a life as I can - that means keeping him in school, Neil and I working and giving him opportunities to be just like his friends.

I'll try to post from California with updates and photos so stay tuned!

Just a random picture from Thanksgiving weekend during a sleepover at my parents house.


  1. Happy to hear Will is doing so well and achieved some very big milestones! Hope everything goes well in Stanford and the brain scan shows great improvement!

  2. Will is doing so well! So many accomplishments! I am making wishes that you get the best possible news in California. Big hugs!