It's taken me awhile to get this written! Last Wednesday we took Luella to the cities to have a follow up appointment with Dr. Wical. My parents came the night before to watch the other kids and we left early in the morning for Gillette Children's in St. Paul. We were thankful that the winter weather hadn't hit yet and the drive went well.
Dr. Wical was very happy with how well Luella is doing. We are currently at 4 weeks without a seizure and hope to sail through the holidays without any problems! Luella does have some balance issues. Dr. Wical saw first hand how she falls down quite often. The stumbling could be a side effect of the medications or caused by Dravet itself. We are still in the process of getting Luella to her target dose of Clobazam. Dr. Wical said that it sometimes takes kids a little while to get used to the medication and then things improve. A month after Luella is at her target dose (which we will hit on Thursday) we will have physical therapy assessment to see if there is a need for ongoing physical therapy.
One thing that doesn't help Luella with her balance is the fact that she loves to walk on her tip toes. I had gotten Luella a pair of squeaky shoes when she first started walking. I decided to get her another pair to wear now. She loves to wear them and since you have to walk flat on your foot to make them squeak, she tends to walk better and is more stable when she wears them. An added bonus - I always know where she is!!
We are so thankful for how well Luella is doing. We know that there are so many kids with Dravet who aren't as lucky as Luella. We ask that as you pray for Luella that you also remember the many other families that are affected by this terrible disease. Thank you!
Now I need to get busy with my Christmas shopping!!