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!

Thursday, November 13, 2008

Progress Report

Today we had our 6 month Individualized Family Service Plan (IFSP) review with Early Start. Early Start is the government program that provides early intervention treatment for babies with disabilities. It is a free service to us and the thousands of other families with special needs children and is paid for in part by your taxes. That's right; your taxes are actually being used for something good.

The review is to summarize Marley's current development as well as outline goals for her to achieve in the next 6 months. All of Marley's developmental skills fall within the 4-7 month range (which I expected). Her biggest lags are in fine motor (which could be due to her small hands) and cognition. 

There are lots of goals/objectives for Marley to work on thru the next 6 months (too may for me to describe in this blog). Our therapists emphasized that many of these skills are beginning to emerge in Marley, but stressed the fact that it will take diligent work on our part to help her advance. 

I feel really hopeful. It saddens me that Marley can't be like any other baby and just "learn" on her own but I think that Jason and I are up to the challenge. We've weathered so many bumps so far, I knew long ago that nothing was going to be easy about raising a baby with disabilities.

I also met with my support group today located in the classroom of the Early Start program. All the other parents (mostly moms) have children with auditory/visual disabilities (and then some). It's a great group and appeared in my life just when I was giving up hope of finding anyone else I could relate to.  It's the only place I don't feel awkward, pitied or stared at for having a child that looks "different".