I feel like I've been running in a hamster wheel for over a month! From the Minnesota State Fair, church activities, soccer, school, work, football, marching band, school play, Music Boosters... the list goes on and on! There was something to be said about the simpleness of last year. I am glad to be getting back to whatever "normal" is, but it really wears me out!
I've failed to keep everyone up to date on Luella in the midst of our busy weeks. At the end of August, Luella had a seizure to end her longest ever seizure free stretch. Two years and 29 days without a seizure! We are so grateful for every one of those days. A high fever is what ended up triggering that seizure. When her temp started going up I just had a feeling it would cause a seizure. Unfortunately I was away with Ashlyn at the MN State Fair. I knew Luella wasn't feeling well after talking with Jim on the phone earlier in the day. Later that afternoon I felt the need to call home and check on things and it was just then that she was seizing - a mom's intuition, I guess. Thankfully no rescue meds were needed but it was a rough seizure and she chewed up her tongue quite bad. Poor girl.
759 days without a seizure is really amazing and something that many kids with Dravet syndrome do not achieve. We know things might not always be like this and we are so grateful for everyday God gives us. Some people have commented to me thinking Luella was "done with those" - meaning seizures. Comments like that surprise me. We are always ready for a seizure with rescue medication close by. We can never fully let down our guard and that means Luella misses out on some things that typical kids get to do without even thinking twice. While our lives are rarely disrupted by a seizure now, we always have to be prepared just in case.Just as a reminder, Luella's epilepsy is caused by a mutation of the SCN1A gene and until gene therapy is a standard thing, a cure is unlikely. Of course we hope and pray for healing or a cure, but we also know seizures can happen at any time. It maybe WAS good timing since school was about to start and it was a good reminder to teachers and staff that Luella definitely still needs to be watched closely. Without a paraprofessional with her this school year we've had to come up with other ways to make sure she is accounted for and kept safe at school. We really rely on the teachers and staff to keep a close eye on her and so far the year is going pretty well.
After more than a year of online school it was great for Luella to get back in the classroom! I can hardly believe I don't have ANY kids in the elementary this year. It was time for Luella to move up to Middle School and to the 6th grade! She is really enjoying school and the independence she has in 6th grade!
And that brings us to October 21st and Luella's 12th BIRTHDAY!! We had fun celebrating at home with family. Next year when she is a TEENAGER we hope to have a BIG celebration! Her request this year for her birthday supper was fried chicken and mashed potatoes! Dessert was salted caramel macarons and BROOKIES!
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We decided to extend the birthday celebrating into the next day and since the kids were off from school we headed to Sioux Falls for a little shopping, pizza and roller skating!!
HAPPY BIRTHDAY TO LUELLA!!
