Happy Seizure Free Day!!!

Marly and Katy at Donny &
DeAnna's wedding June 2002

Marly Easter 2003

Marly Nov 2005
Marly baptism Oct 2002

How can you resist that dimple? Marly at mutual in 2007

Today is the 4th annual Seizure Free Day at our home. We actually threw a party on the first anniversary attended by friends, teachers, family, and neighbors. I wish I had a picture of that day. It has been 4 years to the day since Marly had her last seizure. We are also blessed to have her off her medications since June 1st 2007!!! That day will be celebrated as well. OK, maybe not celebrated, but recognized. I let Marly have her ditch day for the semester today and she stayed home and relaxed and worked on a project for tomorrow. She is such a special part of our family and I don't know what life would be like without her.

For those of you who don't know, she had her first seizure when she was 3, it was diagnosed as febrile (it came with a spiked fever)and went right along with a 5 day stay in the hospital with a bladder infection. The next seizure was a few years later at Nona's house in New Mexico. I can still remember Vance coming into the bedroom we were sleeping in early one morning and saying that Marly was shaking and wouldn't stop. She and all the DeLaCruz cousins and her brothers had a huge sleepover in the living room(she was the only girl at the time). She wasn't responding to us when we found her just as she stopped seizing. I think we grabbed the Bishop from next door to help administer a priesthood blessing and then Ben and I rushed her to the hospital where she had two more grand mals. The hospital drugged her up well and we drove an excruciating long 8 hours home so we could get her to a neurologist. After that, she only had what are called absence seizures, where we would be talking and she would literally zone out for 10-60 seconds, but no other issues. November 2003 was about 18 months after we had started her on medicine for the absence seizures when I went to wake her for school one morning and she had soiled her sheets and was not responsive. I remember taking her temperature and she was about 96 degrees from being wet and cold for who knows how long. I called an ambulance cause she wasn't breathing as well as she should and we spent the next 5 days in the hospital trying to control many other types of seizures. We finally got the mix of medicines correct at the hospital and could tell she was improving so we took her home. We stayed home from school one more week as the seizures became more and more infrequent. I finally relented and sent her back to school at the request of Marly and the assurance from her teacher and school nurse that she would be fine and they would call me if anything happened.

I think I was most worried about the fact that with every seizure, she would lose bladder control so she had to wear pull ups to school but she wasn't even worried. We made a deal that if she had a seizure, she would just go to the nurse's office to change (I hope that isn't TMI, but it shows a small bad side to epilepsy). I was also worried about how the children in her class would treat her, knowing that if they saw her have a seizure, it could be frightening and weird. On the contrary, they were so loving and kind to her, it reinforced my decision to send her back to school. I'm glad they knew and loved Marly for the sweet person she was before all this happened.

Medications were hard to balance. I was so glad to finally get them under control, that was my only concern. I really wasn't thinking about how they were affecting her personality until her teacher and I had a conversation one day about how Marly just wasn't the same girl as she was before the episode. I did some more research about the medications and came to the realization that possibly the mixture (there's not much research regarding using multiple medications and side effects from that). I felt very strongly that we needed to see if we could drop one specific medicine and see if she was still controlled. I persisted with the neurologist and he finally relented to weaning her down to one. Thank heavens it worked to control her seizures and return my sweet girl with her original personality. I didn't tell her teacher at the time, as my own little test, to see if she would notice. Less than 4 weeks later, she called me and mentioned that Marly had started to return to "normal". I was convinced that we had made the right decision.

Today Marly is an active, life loving, boy crazy, 13 year old with a bright future. She started playing coach pitch softball when she was little, but when things got really scary, we made a decision that except for school and church, we would always be with her through her other activities so we didn't have to always explain about her epilepsy to others. That is when Ben started coaching her teams and he has been an awesome part of her softball life ever since. This year, she will be playing Juniors league and Ben decided we could let her try a new coach so we'll see how that goes. She has a strong testimony of the gospel and a deep testimony of God's love for her. I am so blessed to be the mother of such a wonderful spirit, I sometimes feel inadequate. I love you Marly and I hope we celebrate this day for the rest of your life.

There are many more families who deal with much worse cases of epilepsy than our family has, if you want to know more about epilepsy, please visit this website that brought me comfort on my many sleepless nights:
http://www.epilepsyfoundation.org/