NEVER still!!

Hannah is doing great right now. Her last seizure was Feb 14th, on the same day we got her diagnosis. She is currently on 4 anti-seizure medications. At first she was very groggy but now she is back to herself. She is all over the place!!! She is never still. She has to constantly be moving and doing something. Even when she is drinking a bottle she will do one of these things, play with her feet, pull her hair OR your hair (whichever she prefers that day), play with YOUR teeth or play with YOUR nose. Like I said, she is never still. She has some new things she likes to do. They are all great except for one that is not so pleasant. She screams!! I am talking high pitched like someone scraping their fingers on a chalk board. She doesn't even have to be really mad to do it. It is just her new way of getting mommy's attention. She is pulling up to a standing position on a regular basis and would probably love to start walking around while holding on but she is way to unsteady on her feet. She loves to crawl into the laundry basket that I have her toys in. Since she has no concept of heights and no fear many times I have caught her crawling out the other side only to almost land on her head if it wasn't for me catching her. She is loving books!!! This make me really happy. She will sit while we read to her. However, she does like to give the book "kisses". What can I say? She is NEVER still. :)

Hannah - Who she is.

Hannah is a beautiful 9 month old baby girl. She lights up the room with her infectious smile. She never meets a stranger and loves everyone she meets. She is funny and makes us laugh everyday. Her heart is as big as the world and her love knows no end. She just happens to have Dravet Syndrome. Notice I say she has it not it has her. Dravet Syndrome does not define Hannah. Many people do not even know what Dravet Syndrome is. I had never heard of it either until Hannah started having seizures and I started doing research on the internet because as a mom I knew that Hannah did not have just any seizure disorder. It took the doctors 6 months to diagnose Hannah. That sounds like a long time but it actually is quite amazing. A lot of families go years without answers. Dravet Syndrome is a very rare form of Epilepsy. It does not go away and there is no cure. It can cause multiple seizures a day that are devestating to a child's brain. When I say multiple that can mean upwards of close to 100!! Dravet Syndrome starts in infancy and progresses as the child gets older. Due to the mass number of seizures and the length of them it can cause developmental delay of both the physical and mental. The seizures are difficult to control and most often need emergency medical intervention to stop them. Every child with Dravet Syndrome is different. The seizures are different, their development is different and their journey is different. Not much is known about Dravet Syndrome. It is genetic but they are not sure about the herditary aspect of it. Hannah will always be our promise and our possibility. I have sang that song to her since birth and it has gotten me through some tough times like when she was intubated due to a seizure that wouldn't stop. Here are the lyrics and they describe Hannah.



I am a promise I am a possibility I am a promise with a capital "P"

I am a great big bundle of potentiality

And I am learnin' to hear God's voice

And I am tryin' to make the right choice

I am a promise to be anything God wants me to be.

I can go anywhere that He wants me to go

I can be anything He wants me to be

I can climb the high mountains

I can cross the wide sea

I'm a great big promise you see!

I am a promiseI am a possibilityI am a promise with a capital "P"

I am a great big bundle of potentiality

And I am learnin' to hear God's voice

And I am tryin' to make the right choice

I'm a promise to be anything God wants me to be

Anything God wants me to be!



Hannah is our promise and our possiblity. We love her with all of our hearts and hope to rasie awareness so that one day they can find a cure for Dravet Syndrome.