Rotten News

I talked to our doctor's nurse yesterday and she read me some of the EEG report so at least we didn't have to wait until after the weekend to hear something.  Unfortunately, the EEG was not good.  Ruby's infantile spasms have morphed into other seizures and now the doctors are diagnosing her with something called Lennox Gastaut syndrome. The EEG recorded Ruby having three different kinds of seizures on Monday alone.  I have read about this syndrome before and we knew Ruby was at risk for it, but I was hoping we would never have to walk down this road. Kids that have this syndrome have multiple different kinds of seizures that are very hard to control.  We were praying that when her infantile spasms changed into something else the new seizures would be something that were easier to control, but that looks like it won't be the case. 

Yesterday was tough. I feel like we have heard bad news from doctors again and again and I was really hopeful that this time around we would have some positive news....some glimmer of hope that my baby 's brain won't continue to be tortured with seizures....instead, we heard the opposite.  This just confirms that Ruby will probably deal with seizures the rest of her life and they will make it very hard for her to develop.

Today was a little better. I talked to the nurse again and we are going to start Ruby on a med called Zonegran. Hopefully this will make a dent in her seizures without taking away her giggle.  I did hear her contagious giggle a lot today which was a blessing. 

Thanks for your continued prayers for peace, we will need them. Thanks also to those of you who are helping by bringing meals. It has been a blessing to be well fed this week without having to cook! We appreciate all of you!