We arrived in Minneapolis today for Luella's doctor appointment and the start of the Dravet conference tomorrow. Luella's appointment went well. Dr. W was so happy to see that Luella has finally gained weight!! Luella is doing tremendously well developmentally even though she continues to have about a seizure a week. I have been excited for this conference but also worried about seeing so many other kids who aren't as well off as Luella - I know that will weigh heavy on my heart. Dr W said today that there will probably be many parents of little babies here that will be encouraged to see Luella. I do hope that that Luella can offer some hope to families who are just beginning to deal with Dravet Syndrome.
We checked into the hotel this afternoon and got settled a little before heading out for supper. On the elevator ride down to the lobby Luella had a seizure. It was quickly stopped with a dose of midazolam. She napped awhile and was feeling better after eating supper. We are hoping now that that seizure is out of her system the rest of the week will be great.
So good to meet you too Heather! You and little Luella are so sweet and I am excited to start following your blog and keeping in touch with you. Bless you and your family. I appreciate your prayers and you will be in mine as well. I wish you the best.
ReplyDeleteAimee