A Long Time Coming.

It's been months since I have written a post. I'm not sure why I have avoided updates. Maybe pure exhaustion.We have been preparing for six months to return to primary children's with Aurora for a very important visit. She has been scheduled for a follow up EEG and meeting with her neurology and genetic teams in hopes of discussing a ween. Something we have been praying for since she was diagnosed a year and a half ago.

We decided to ease our nerves a bit and take a short trip to Green River, Wyoming to visit my mom over the holiday weekend.

despite being eaten alive by mosquitoes, it was nice to just get away  for a couple days to recharge in a beautiful new place.

Jordan's good buddy Carl had really missed him

The kids had a blast playing with the big dogs and running around in the backyard with the chickens.

When Monday morning came around Jordan had to head home for work and my mom and I packed the kids up to head to our busy day of appointments in Utah.

Up until now all of our appointments had been at the main Primary Children's hospital in Salt lake. For the first time we were scheduled at the Riverton outpatient branch, which was stressful, well, because it's change.

 Rory did amazing during the EEG, but she has gotten accustomed to them by now.

She spent the rest of the day sporting that coveted EEG hairstyle, all full of goo.

Surprisingly, even Noah was pretty good while waiting for the doctor to come meet with us. I would say that's a sign we do this too often. Then again, this picture was taken before he covered the lower half of his body in chocolate milk.

The neurologist of course had to discuss the scary possibilities with us. Letting us know that the EEG may not be normal, There may not be a definitive answer from the EEG. All of those "maybe's" that I love so much. The doctor was really hoping he would be able to get the results why we were there to discuss our options and possible ween, but as my luck would have it, the results hadn't come yet. I left his office feeling disappointed.

We loaded the kids up yet again for the drive into Salt Lake to meet with the geneticists. It was on that car ride that I received the most beautiful Email I have ever read.

"Aurora's EEG results looked normal. I am happy to share this news with you. I think that now would be a good time to attempt to taper Aurora off of the medication..."

I felt a happiness with this milestone that fits it into the books next to our wedding day and the births of our children.

Of course we are instructed that it is an ATTEMPT  not a guarantee. There is a great chance that she could relapse, or start having different seizure types. He was careful to remind me to continue to watch her diligently, continue practicing seizure precautions and safety, and keep her seizure medications in  the house for at least TWO MORE YEARS. So yes, we may not be out of the woods yet, but this is the start we have fasted and prayed for.

Meeting with the geneticists was equally as pleasing. They were excited to see her progress, they even teasingly asked, "why are you here?" They also spoke with me about the options of further genetic tests we can continue with in hopes of pinpointing the cause. I pray we never need to turn to that option. They also made sure to let me know that there is at least a 25% chance that if Jordan and I have more children, they too could have this horrible condition.

We celebrated by taking the kids to do a little shopping. This is the joy of an amazing, strong, and victorious little girl who has beaten all of the horrible and discouraging odds that have been placed against her.

I know that I have mentioned before the ache and the despair that comes when you watch every little seizure steal a piece of you child away. To see my baby who was exploring, learning, and growing each day to suddenly have her slate wiped clean overnight. That is a devastation that I personally am still trying to heal from, I could use some lessons from my daughter.

I remember when Noah just decided he was ready to walk. It was almost seamless and effortless for him to just stand up and learn. That is a pleasure that every parent dreams of. For Rory it was a concentrated effort. Week after week working with a physical therapist to overcome the damage that had been caused by something out of our control, and all she wanted was to be able to keep up with her big brother. To walk into see her doctor a year and a half later and be able to proudly say that she is a perfectly normal 2 year old girl when she started with nothing. That is a victory that I cannot find a comparison for.

There has been many times that I have had to borrow some of her courage and optimism, there have been times that I have spent hours on my knees begging for comfort and the strength to be able to get her through one more test, or one more sleepless night. Over the years we have faced many heartbreaks and hardships, but there is nothing that crushes me like having to watch my children struggle and fight.

Guys, this leg of the battle... she won. She kicked epilepsy in the butt and walked right into remission.

I cannot even begin to express my deep gratitude for our extensive support system. Because of our friends and family that have offered to carry our burdens, given us shoulders to cry on, and who have prayed, fasted and taken our names to the temples, this overwhelming trial has made my disastrous weaknesses unimportant. The overflowing amount of faith has helped us to always feel the spirit and to never give up hope. Heavenly Father has heard us, and our prayers have been answered. You have all helped us to get our daughter back and offer her the chance at the life she deserves. Thank you.