Long Overdue Update

It's been a LONG time since I've posted! And they say, no news is good news, right? Pretty much!! I said last time that we were going to stop counting the seizure-free days - mostly to not disappoint Luella when we are getting close to a record and then a seizure happens. I did do a count tonight because I was curious and here we are 130 days without a seizure!! We haven't set a new record yet - that will be at 175 days, but we are thrilled with how well she is doing seizure-wise.

Ready to skate!!

Because of those seizure-free days she is getting to do so many things that we didn't ever think would be possible. She has been taking ice skating lessons for the past 5 weeks. When I asked her if she wanted to sign up to learn to skate, she started crying and said, "I've been waiting my whole life to take ice skating lessons!" So funny!! She took to the ice with ease! She loves it!! She doesn't always wait for instructions from the teacher... she just wants to GO!!

Luella got an electric scooter a couple months ago! YIKES!! I know!! She LOVES it! She's been wanting to ride it to school forever! I told her when the weather was nicer we would try to do that. Well, last week her bus para happened to not be available for a couple days SO on Friday I rode my bike with her while she zipped along on her scooter. She bought a bike lock with some birthday money so we locked it up good at school and then I rode home. When school was out I rode back to school and we went home together! She is already asking when we get to do it again!

Luella REALLY wants her independence... she wants so much to be able to go off on her own and ride bike or be alone outside. While she is doing so well, I just can't take that risk. Thankfully she has a great sister and two great brothers who help watch her when I can't be right there but I wish I could give her that independence. She gets so tired of ALWAYS having someone around.

School is wrapping up and 2nd grade will be done soon! These last several months of school have been more of a struggle for Luella. Her ADHD has kicked in and focus and attention are a real struggle. We are so fortunate that Luella has such an amazing support staff at school to help her through. She is super smart and really doing a great job of keeping up with her peers academically, she just needs quite a bit of redirection during the day. Along with that have been some behavioral issues... lots of emotions! She can be giggly and happy one second and angry or sad the next.

Luella met with her neuropsychologist back in January and she had lots of good ideas for things we could try. Some worked for awhile and then lost their effectiveness. One thing Luella is doing now is taking scheduled breaks throughout the day to swing in a therapy swing or do some other activity to help her focus better when she gets back to the classroom. So far it seems like those breaks are helping a bit. With the end of the school year being so close we aren't making any other changes right now but we'll be ready when school starts again with some other ideas!

Thank you for keeping up to date with what's going on with our Luella! Stay tuned for the 5th ANNUAL "a cake 4 a cure" fundraiser!! It'll be launching on Saturday!!

GET READY!!!!