Great News and Messy Situations

We just found out some wonderful news yesterday! The FDA may approve one of the main drugs used to treat Dravet Syndrome this fall!! It is called clobozam and it will be marketed as Onfi here in the states. We are so excited and hope to hear more good news as time goes on.

On the other hand we have experienced messy situations x 3 the last two days. Hannah had shown to have put on a whopping 5oz at her last visit to the dr this week. Since we are worried about her growth this was less than what we had hoped for but at least it was a gain. Well needless to say she has probably lost it between yesterday and today. She has been VERY constipated the last week so I decided to feed her a SMALL jar of prunes. I probably will just stop there becasue I am sure you can imagine the outcome. I decided from now on I will just put a dropperful into her other food every few days to keep things moving. :) Maybe one day I will be able to say she put on a pound but it seems that today is not that day. Overall she is doing ok. She has been having myoclonic seizures everyday this week and one day she had the 5 min tonic clonic but overall is has been a pretty calm week. I am learning a lot of new information everyday and I sometimes feel like my brain is on overload but I welcome the knowledge. Knowledge is power and I plan to use it in the fight for my daughter. She is my promise.

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.