Jenelle's Journey

Jenelle was released this afternoon after another EEG. She finally made a dramatic change of status early Sunday afternoon. Saturday evening, she was more awake, however Sunday morning she was still a little lethargic. We took Jack and Jenelle for a walk around the hospital in her red wagon they provided. When we were done, Brett and I took Jack to lunch leaving Jenelle with Grandma. Upon our return, she was a completely different baby, rolling around in the crib and making noises. It was a great to see her back to somewhat normal.

About 10 minutes after we returned from lunch, Dr. Phillips made a surprise visit. He said he had been thinking about Jenelle's status, and realized we'd done something wrong. When Jenelle was admitted last Wednesday, I told Dr. Phillips that I remembered that her best day of seizures was the day after the B6 treatment two weeks ago. So, upon admission, they gave her B6, along with the increased Phenobarbital, and a decrease of ACTH. So, technically, we were making 3 changes at once, so his problem is determining which drug is making the difference. Apparently, in addition to B6 deficiency, B6 is also used solely as a treatment for Infantile Spasms. Usually it is used in conjunction with another drug. So, Dr. Phillips requested another EEG this morning, so he could see her response to the B6, and determine whether or not it is helping her seizures. B6 is good for her anyway, so she now gets it twice a day. We will hold off a little longer on starting the Vigabatrin until we have a better reading of her B6 response, and her Phenobarbital level. We will be starting it soon though, probably the end of this week or early next.

There was an article in Sunday's Orange County Register about the various Epilepsy Centers now available here that weren't available two years ago. The article featured a photo of our Dr. Phillips outside the CHOC Epilepsy Center. Brett and I teased Dr. Phillips on Sunday and asked for his autograph... we told him that in addition to seeing the "famous" Dr. Shields at UCLA, we now see the "famous" Dr. Phillips of Orange County. We are so lucky to have such wonderful resources so close at hand.

Big Brother Jack is doing well. When he and Brett drove to the hospital to pick me up for our trip to the pumpkin patch on Saturday, Jack asked where they were going. Brett replied that they were going to the hospital to pick me up because I was there with Jenelle. Jack then said, "Yeah, Jenelle's sick, but Mommy is going to make her better!" This evening after I picked up Jack at daycare, I took him on an errand to Target to get Jenelle's prescriptions. While we were there, I bought him a pair of new shoes with "Thomas the Tank Engine" on them (his absolute favorite of course.) When I put him in the car as he was wearing his new shoes, he looked up at me and said, "Mommy, I'm happy." Oh, melt my heart - he is just so sweet, and he really is handling all this very well.