Monday, April 20, 2009

Just the facts...

Every time I sat down or thought about sitting down to write a post about our conversation with Dr. Chugani, my head spins. My emotions are all over the place. Just trying to get a cohesive thought down has been nearly impossible. So instead, I am writing this post about the facts...leaving behind the emotions for a moment.

The EEG...
  • The EEG is never really convincing.
  • The left side is worse than the right side but there is independent right side activity.
  • Her brain is electrically caught up in a storm. Eventually the brain burns out around the age of 4 or 5 years old. Meaning her development will level off and quite possibly regress. Once this happens, the skills are not regained.

The PET scans...
  • The PET scan looks much worse on the left.
  • There is a subtle area of abnormality in the right temporal lobe.

The MRI...
  • The MRI shows a blurring in gray-white matter in the left hemisphere.
  • Nothing is noted in the right hemisphere.

Additional evidence or reasons discussed on why the committee agreed on surgery...
  • She is showing preference in her left hand.
  • Jackson's case (which is similar to Sophie's) has proven to be successful.
  • Since she has failed so many medications, this is the best option for her even though she does not have the best scenario for surgery.

9 comments:

Krissy said...

I really wish there was something more I could say but in any case you're in my prayers.

Anonymous said...

I know that those of us never in your position can't begin to appreciate the weight this decision has placed on your hearts.

Listing the facts, with emotions set aside it certainly seems like the best option...the only option to give Sophie an opportunity at a future she won't be able to achieve without it.

Our thoughts and prayers go out to you every day.

Love,
Barb

baby trevor's mommy said...

You've been on my heart all weekend.

I know it's hard to lay it all out there for all the world to see...and digest...


it takes courage.


Thank you SO much for being courageous!


Please know that there's a little mommy in RI thinking...and praying...and hoping...alongside you!

XOXOXO


...danielle

Kelli TenHaken said...

Wow- this is a lot to handle. I hope you find peace about the decision. Thinking of you, Kelli

Holli said...

I've been thinking of you all and constantly checking in for updates.

Although many of us pray for our little ones to be candidates for surgery, we probably cannot even begin to grasp your emotions right now.

Thank you for sharing with us and remember how many of us are praying for you!

Holli

blogzilly said...

That's an astounding development. And so much to think about. I know I can't really come up with anything profound to say other than you are in my thoughts and like everyone else I am seriously rooting for you guys.

Anonymous said...

I know that having a surgery of this magnitude without the assurance of a successful outcome is overwhelming. Be assured that Chugani's Team, including Dr. Sood and Dr. Asano are very skilled. They are some of the smartest people I have ever come across. Also, the staff at that hospital are simply amazing. My wife and I went through the ringer with our son after the grids were placed as our blog will tell you.

For your family, this too will pass. Have Faith - You are in good hands.

Should you have any questions, we are here for you.
Jackson's Dad.

JSmith5780 said...

I read this yesterday and your post on the group.

I know this is a hard decision, especially being so far along in your pregnancy. First, I want to remind you, you need to relax as much as possible for that little baby. I know the stress of Austin's seizures caused me to deliver my twins early. I don't want that to happen to you.

On to the surgery. As everyone has said, Dr C and his team are truly the best. I am very interested though that they are considering MST. Last I knew no one, other than Chicago, was doing the MST. I know a little boy, lcoal to me, that had this done 3.5 years ago for LKS. His progress over the years has been nothing short of amazing. He's in 4th I believe and nearly mainstreamed for all his subjects. Considering 3.5 years ago he was seizing constantly and couldn't speak (he could sign) it's incredible. I emailed her this morning to find out how much brain they did MST on and if it included the motor cortex. I will get back to you when I hear from her.

Good luck and I'll be thinking of you all!

JSmith5780 said...

I checked with my friend, only the language center in his left hemi was MST'd. This was back when they were FIRST starting the procedure, so I am assuming they are more comfortable with the procedure and they are finding more and more is being able to be operated on.

Now that you have a surgery date, and it's AFTER the baby, focus on your well being and grow a healthy baby.