An ENTIRE YEAR

Jayen has had seizures for an entire year straight today. I remember getting ready to go to the hospital to have our new baby girl and seeing Jayen have a seizure after one year and four days seizure free. We have never been unable to control his seizures for this long. We are in new territory and I am fearful this is something Jayen will live with for the rest of his life. We have quickly learned (with Jayen in preschool now) how often he is excluded or things have to be modified to work for him. This is our life... Our Crazy Journey!

Last day of school

Today was Jayen's last day of school, but it started off really bad. Of all the days today had to be a seizure day. I was really worried he was going to miss out on all the fun activities planned for the last day of school. It was Jayen's first field day and the rule is that if he has a seizure he doesn't go to school. So instead of calling the secretary as usual, I emailed the teacher and asked if I was with him today if he could still attend. She was more than willing to let him join in the fun. So I just had to find someone to watch the other two kids within a moment's notice. Thankfully Uncle John was home until 11 and daddy could get them on his lunch break. It all worked out for the best and mommy got some great time in with Jayen!

Jayen Loved the parachute!

 

Then we celebrated with McDonald's. Don't tell Dalan!

Family Bowling Fun

We love bowling!!! After the near perfect church experience today we decided to celebrate with a bowling trip.

Mommy won, but "it is still fun to play!" As we remind Dalan everytime. We all enjoy going bowling! Brilyn even took a turn. We think she really just wanted to crawl to the end and knock them down herself. She tried but we caught her before she made it to the end ;)

We love ONFI!!!! But still another seizure

Well 17 days seizure free is a great start! I will call Minnesota on Monday and see what we want to do, but I am so happy we are getting somewhere. I knew this was going to be a good medicine. I should have pushed for it sooner like I wanted to. I need to start going with my gut a little more. Someday I will be able to stand up for you buddy and be your biggest voice!

He gets it!

Daddy came home for lunch today, as he usually does. We all ate lunch, cleaned up our mess, then daddy was getting ready to leave. He came around giving each of us a kiss and hug and telling us goodbye, this is our daily routine. But Jayen noticed something a little different today. As Matt was walking out the door to head back to work, Jayen started yelling "Ha Ha" and pointing to his head. Daddy forgot to take his hat with him. The hat was on top of a shelf and was barely visible to anyone else. I couldn't believe he caught that oversight. He really does understand so much more than we think!!!

FINALLY STARTING ONFI!

I have been waiting for this drug for months now. We have tried all the other drugs Dr. Frost wanted us to try and now we finally get to the one mommy was hoping for. I had heard so many great things about Onfi. I really hope this is Jayen's miracle drug too. Started it tonight. Praying for some seizure relief!!

I can do it!

After Jayen's fever finally broke, he wanted to go outside for a little bit. When I went to check on him this is what I saw! He has been working on riding a bike for at least a year now.

 

Way to go buddy! I am so proud of you. Can't wait to go bike riding with you at the park!