Little Luella: Kindergarten! (and a seizure)

Luella just completed her first week of kindergarten!! How amazing is that?! On Monday she went to school with mommy for a quick one hour orientation. She had a little time with her teacher and some time playing on the playground. Tuesday was the first full day - 8:00 - 3:15. A LONG day! Daddy took her to school but she got to ride the bus home - the "real" school bus with her friends and siblings!! Our school has been so terrific about making sure Luella has the most typical school experience. Luella has a one-on-one paraprofessional with her during the day at school and she also rides the bus with Luella! It's so fun to see her running to the bus in the morning and precious to see her in the afternoon - getting off and running to me for a big hug!

Riding the BUS!!

Reading a story about epilepsy to Luella's class.

Luella didn't seem to be too tired out on Tuesday after school and she continued to play hard outside after getting home. Wednesday she was a bit more tired and a little whiny at school. I stopped in to Luella's classroom on Wednesday morning to read a book about epilepsy / seizures to the kids. Luella tried to push me out of the room! She didn't want me there! :-) She let me stay to read but I had to make sure to leave right away when I was done! She is SO independent! The kids were all very attentive to the story. I read the book Taking Seizures Disorders to School by Kim Gosselin. It is a great book to help explain seizures to younger kids. The main character in the book is Jaime but I modified the story to make it about Luella. The kids were good listeners and answered all the questions I asked after the story. I pray they don't have to see Luella having a seizure but if they do I hope the time we spent talking about seizures will have them more prepared.

After school on Wednesday I could tell Luella was more tired but she continued to play and we tried to get to bed a little earlier. She rustled around quite a bit before she finally fell asleep and then just a few minutes after falling asleep her alarm began to sound. I knew she was having a seizure. Jim and I quickly sprang into action. It's sad that this has gotten so routine for us that we barely need to speak to each other during everything... we just do what we need to do. Sadly we needed to give her three doses of midazolam again before the seizure finally stopped. This seizure was almost identical to her last seizure on July 30th. So it had been 27 days since the last one. My initial reaction was - well, two full days of school wore her out and now she is having a seizure. Jim was more optimistic and pointed out that it had been 27 days and was getting to the point when we would begin to expect her to have one. So hopefully that was all it was and school didn't play any part. We would appreciate prayers for Luella to have the best year of kindergarten without interruptions from seizures!

Everything at school is in place for her to have the best year! Before school started we trained all of the people who will be with Luella at school. She has an amazing kindergarten teacher and paraprofessional along with many other teachers and paras who will work with her throughout the day! We are so fortunate that Luella has such a great team! The majority of the day Luella will be with the rest of her class in a typical kindergarten classroom. She will spend about 30 minutes a day with her special education teacher and will also go to speech, OT and DAPE (developmental adapted physical education) at various times during the week too.


Luella and her kindergarten teacher Mrs. Dreessen.		Luella and her 1:1 para Mrs. Kneip.

Luella's special headband for gym.

During the summer I was looking for a something to help protect Luella's head when she is at gym. She has gym class everyday and seizures are more likely when she is running around and playing hard. The gym floor is hard and it would be difficult for a para to be close enough to catch her in the event of a seizure there. I was happy to find the Crasche Middie headband. It is designed for figure skaters but works perfectly for Luella. It's cute and not as obvious and restrictive as a full helmet. Thankfully she is receptive to wearing it!

Remembering back to just over four years ago when we got Luella's Dravet syndrome diagnosis... I remember googling "dravet" and feeling just devastated... reading the stories about severely disabled children with Dravet. Kids who couldn't walk or talk. Kids who had feeding tubes. Kids who had hundreds of seizures a week (or more). I wasn't sure what Luella's future would be like. It was hard to not think of the worst case scenario but whatever Luella's future held, I knew God would be with us. We are SO blessed by how well Luella is doing!! Everyday I'm reminded of how different things could be - we know many other children with Dravet who aren't doing as well. We also know that things could change in an instant - any seizure could change everything, but we are so thankful to God for giving Luella the opportunities that she has!

Here are a few more pictures of Luella's first week of school!