Tuesday, November 25, 2008


I know I've had some of you worried with my cryptic facebook status entries. I didn't want to go into the details until we saw Marley's neurologist today.

Background: Since Marley's febrile seizure last month she has had at least 3 episodes of facial spasms/twitching. It usually occurs when she is tired and I am feeding her a bottle. She'll squint her eyes, wrinkle her nose and contort her lips. Almost like someone is tickling her face lightly with a feather. It lasts 5-10 seconds and she'll usually whine or cry. It is obvious to me that the movement is involuntary. 

So of course that sent me into a spiraling pit of despair. Seizures are so common with her syndrome I think I assumed we were at the beginning of the end. I felt defeated and I anguished over the possibility that she would have to be on anti-seizure medication and even worse- regress in her development.

Today we saw her neurologist who alleviated my fears. I described the facial twitching in detail and Dr. Jenkins listened intently. She asked me if I could "snap" Marley out of the situation. I told her that during the most recent episode I sat Marley up and she stopped. Dr. Jenkins assured me that this was a good sign. She said a seizure is not truly a seizure if you can snap her out of it. Her thoughts were that the facial twitching was just an unusual side effect of being tired or over-stimulated.

She also did a full evaluation of Marley and commented on her progressive development. She estimated that Marley is about 6 months in development which concurs with the evaluation by her Early Start therapists. Overall, she was very pleased and even said, "I think she's doing great".

I am so relieved! I am still cautious but for now I feel so much better about Marley's condition. On a side note, Marley started clapping today. Another major developmental milestone. Yay!


lauren said...

I am so happy to read that you recieved good news today. I have read many of your posts and I want you to know how strong I think you are. You daughter is adorable and you are such a strong and amazaing woman. Your little girl is lucky to have you as a mom.

Tena said...

Yay for clapping! My son doesn't even do that yet and he's almost 11 months old. So she is ahead on some things! BTW her eyes are just gorgeous in the bonnet picture.

Grace said...

That's great news, go Marley! I love the new pics with the hair bow, stinking adorable!