Birthday Angel

A year ago today a beautiful baby girl was born weighing 7 pounds and 19 inches long. Hannah is the strongest little girl I know. In the last year she has been through so much and despite it all she always has a smile on her face. As of today she weighs 17 pounds 11 oz. This means she has gained 1 pound 2 oz in the last month. That is a great improvement and if she continues to gain weight like this then we shouldn't have to put in a feeding tube. Her siezures continue to be an everyday battle and some days are worse than others. However, because we are becoming more comfortable caring for her after her larger seizures she has not had to hospitalized since Feburary. If they last more than 3 min then we give emergency medications to stop them. Over the last 2 weeks we have had the paramedics out 3 times due to the lengthy seizures not stopping even after we give emergency medication. The seizures lasted 9 min, 15 min, and 20 min. She has been stable by the time the paramedic arrive so we have chosen to keep her home where she can be comfortable. She likes to cuddle after her seizures and doesn't like to be moved around. Once she wakes up and is back to herself we always see her big beautiful smile once again. This smile melts my heart and is like sunshine. Hannah's gross motor skills have improved quite a bit lately. She now sits up unassisted, can pull to stand, crawls on her hands and knees, and she can even walk along the side of the couch by side stepping. Her fine motor skills are on about a nine month old level so we are working on them on a daily basis. We had tubes put in her ears early in April and so far she hasn't had any ear infections. Her hearing seems to have improved and she does make some sound just not as often as she should. We have noticed that she makes the majority of noises when she is moving such as swinging back and forth. Only time will tell how much speech she will be able to obtain. Even still it is in the back of our minds that no matter what skills or words she gains it can all be yanked away in the event of one seizure. This is the way of Dravet Syndrome. But no matter what Dravet Syndrome has in store for us it never takes my baby girl's beautiful smile away. Happy 1st Birthday to my little angel.