Navigating Moguls

We have been enjoying the Olympics. As I sit here and write this, the NBC Olympic music is playing. Kate loves the figure skating. I'm more into the mogul skiing. Kate asked last night why anyone would really want to do that. There's a thousand bumps on a very steep hill and some people think it a great idea to strap some wooden planks on their feet and go over the edge. I told her there's a rush involved with navigating those bumps and figuring the best way to go over and around them.

And that's what we are doing with Haddie. There's many, many, many moguls behind us. Just read the previous blogs to see that. And now, there's another mogul in front of us called West Syndrome.

We had an EEG done today because a month ago the EEG showed that Hadassah has  chaotic "waves" showing up. The good news is that there is brain activity. The bad news is that these waves aren't good. The waves, as we understand them, are sub clinical seizures. They call this a "hypsarrhythmia" or "infantile spasms" which falls under the category of West Syndrome. Haddie doesn't currently show any visible signs of these seizures. However, today's EEG shows that they have progressed. The neurologist believes that this will continue to progress. Even without visible seizures or spasms...this is slowing her development...and he believes eventually it could cause her to go backwards in development.

There's a few options but the best treatment is a drug called Sabril. It has been tested and seems to have the best results. The doctor believes that this could reduce or even get rid of the hypsarrhythmia. This could really help Haddie in her future development. The negative: 30% of those that taking Sabril suffer some kind of peripheral vision loss. Some of the 30% lose so much that they can only see what's right in front of them and others only lose the edges. We would prefer her to not lose any eyesight. But we also want her to be able to hold up her head, to crawl, or just to smile at us (parents, don't take that smile for granted...we are longing to see Haddie do it!)

So we are going to go for it. It's a bump, a mogul, a...pain in the butt. But God is good...and we pray that he will use this drug to help our Haddie. She's 9 months old today. She's growing (15lbs 8oz), she's moving, she's beautiful, and she has a personality...we have a lot to be thankful for. Hadassah is already a winner.

Bring on the next mogul.