Friday, December 2, 2011

EPI-743, Week 13, Day 3 at Stanford

I will update this post more tomorrow when we're home, but between packing and going to bed, this is going to be a short one.

We met with Dr. Enns today at 9 a.m. then went to the bookstore for some more Stanford gear and then back to the hotel for a nap. We went to San Jose this evening for dinner and playing outside. All in all, a great day!

Now to the meat... Dr. Enns was really impressed with Will's progress and excited. Of all the things we've seen progress with, he said he would have been happy with just one. We also learned the results of the Brain Scan that was done on Thursday.

Basically, there is little to no improvement. Apparently, this is really common with kids who are put under anesthesia for the scan. For those kids who can lie still for 30 minutes for the scan, they typically show an increased level of brain activity.

I felt disappointed. I guess I was looking for the scientific validation that the drug is working. I can see right in front of me daily that something is working, but it's just more comforting to know instead of just believe. As a kid, didn't you just kind of want to see Santa putting presents under your tree? While he is fictional, it sure would be nice to see an increase on that scan and KNOW it's working.

I thought we would have to be told we could stay on the drug, but apparently it was our choice. So, we are obviously opting to stay on the drug and hope that we continue to see great progress. We have to do safety labs every three months now- instead of every other week. And if it's medically necessary we have to come back in three months. That means if we're seeing a lot of bad changes. Otherwise it's optional.

I asked Dr. Enns - I just don't get what I see in front if me and then what I'm told will happen. He gave a great analogy (that he gave before, but I didn't really get it).

If you are a Ferrari you can pretty much go 100 mph no problem. If you're an 1988 Nissan you're lucky to do 50 mph. When you try and push the Nissan to go 75 that's when the engine starts smoking and the car is on the side of the road.

Will is the Nissan and the rest of us are Ferrari's. When his body is attacked by a virus or other environmental stressors such as stress, anxiety or whatever make any normal person tired, COULD and usually will make Will's body react poorly. My suspicion is that's why they told us that it's unlikely he will live past his teenage years - his body likely won't be able to handle puberty. Just my own theory....

I get so tired of wondering how long I get my baby boy with me here. How long I get my "healthy" boy. How will we do this? How and why... my two least favorite works. Ironically, "why" is now one of Will's favorite words.

Will is one of 28 children in the world that get this drug. That in and of itself is an amazing, precious and indescribable gift. We have so many things to be thankful for including (usually) the most good natured happy little guy. Who goes through all this smiling? I thank God every day for that.

I will post more when we get home as well as some really cute pics!

For now, from Cali...

1 comment:

  1. I'm so bummed too that you didn't get to see the physical proof on the scan, but Will's progress is the proof. He's doing so. stinking. well. that is the proof ;)

    thinking of you guys always. big hugs,