Wednesday, November 4, 2009

Monday, Monday...

Monday cannot come fast enough for us.  

C'mon KETO Diet!  It has to work, right?  It at least has to help!

The seizures are coming fast and more furious than normal and I'm about to go CRAZY! I'm not sure if I've ever posted actual numbers but when Noah was hooked up to the VEEG they saw 31 seizures in that 24 hour period.  I usually count about 15-20 (These are clusters.  I'm not counting the actual individual seizures) a day but I do sleep on occasion so I miss some.  I tried to count individual seizures one day and a single spasm cluster got up to 49 and I just couldn't keep up.  He needed me to comfort him more than I needed to count.   

We are increasing his Phenobarbital and hopefully that will get us to the diet and Noah will get some relief!  

Mama is getting desperate!


  1. Hi there, just wanted to introduce myself; I stumbled upon your blog earlier. We follow Kendall's hope too. My daughter Hope also has infantile spasms, which are just the tip of the iceberg sadly. Noah is gorgeous! Good luck with the diet; it's a path we are investigating
    Caroline xxx

  2. Hang in there girlfriend. Things have to loosen up soon. Love and Hugs, Jodi

  3. Still thinking of you all!

  4. Loved the Halloween pics! He is so beautiful--all that hair. We are praying that everything goes good. How many times can I say hang in there! We love you, Stacy

  5. I tried counting seizures once, they asked us to do it in hospital - it is one of the most depressing things I had ever done, my son became a tick box excercise. Good luck with the Keto diet.
    Ian, Jude's dad.

  6. Got the calendar marked for the new diet start. Praying before and with and during all milestones. We love ya'll.

  7. Good luck! We are thinking of you all always. Come on diet...WORK!!!

  8. Praying that the diet works for your cute little guy!! It IS a lot of work but it is definitely worth it if it works. The first couple of weeks are the hardest, and then you will develop a routin that works for you. I stopped counting seizures a long time ago, it is just way too depressing. My heart & my my mind just know that he is having way too many. Can't get in to see Dr. C soon enough! Good luck with the diet & if you have any questions, I am here. Connor was on it for a year so I picked up some tricks in that time.