THE "S" WORD

I just need to blog about the "s" word. "S" for "Seizures." It's been a huge and painful part of my family's life for 4 years. Our 4 1/2 yr old, Noah, has a genetic form of epilepsy called GEFS+ (Generalized Epilepsy Febrile Seizures Plus). The genetics of it all is too crazy to talk about. While watching "OPRAH" yesterday (I used my new DVR to record it - I feel so technologically advanced now) I saw Jenny McCarthy describing her son's seizures. It was so difficult to watch it. It was literally soooo painful to think about all that our little angel has been through. Here is a run down of a little of the past 4yrs:

• First seizure was Labor Day 2003
• He's now had at somewhere around 150 seizures
• Suffocation during most seizures
• At least 40 ICU visits/overnights
• Around 10 seizures that we were asked to leave the ER room because the doctors didn't think he was going to make it.
• Some seizures lasting anywhere from 1 hr - 3 hrs
• Nobody around with a GEFS+ kid to talk with about this stuff
• Meds tried and failed - Phenobarbitol, Depakote, Keppra, Topomax (still using although unsure of benefit)
• Depakote caused him to stop producing blood platelets which meant serious internal bleeding = platelet infusion
• Keppra caused prolonged seizures. But it took us 18 months to figure this one out.
• Weekly seizures normally. More when ill.
• Tracking fevers like crazy
• Calling 911 - ambulance, life flight, and Emergency Transport rides
• Dashing madly in the car to get him to the hospital
• Overnights in the ICU in the uncomfortable chair/bed
• Christmas after Christmas in the ICU
• The first convulsion of every seizure caught from the corner of my eye
  
• Day after day of being on "edge"
• No sleep
• Sleeping with one ear listening for seizures in the next room (it is possible)
  
• Never having my child leave my side
• Watching him and hoping he would live another day
• Watching Noah and wondering if his brain/heart could manage another long long seizure
  
• Undescribeable sadness and worry
• Nightmares about seizures
  

Here are the amazing points of our journey with the "S" word

• Answered prayers
• Learning how to readjust my expectations of life, happiness and purpose
• Patience
• The power of Fasting, Prayer, Love and Temple attendance
• Priesthood Blessings that made a difference
  
• Family Support
• Friendship
• Developing a deeper relationship with my Father in Heaven.
  
• Understanding more of my purpose for being on this Earth
• Walking with "faith" and "hope" in the divine power of God.
• Believing in my "mothering" instincts
• Learning to "stand up" to whatever physician, neurologist, specialist, insurance agency person that I need to hear what I am saying.
• My child as my "case study"
  
• Becoming "one" with my husband and working as a team to help our children
• Constantly thinking about creating "normalcy" for my other children and making sure to give them the one-on-one time and attention they need
  
• Watching my older children become the most caring brothers possible.
  
• Watching my older children become advocates for special needs kids
• THE KETOGENIC DIET

Where are we now? How is Noah? We began the Ketogenic diet through Children's Hospital Oakland in January. For several months, it wasn't working. After completely resticting his diet to a strict Ketogenic Diet - we've seen great things. Any of my friends or family that know about the diet will tell you that it is "hardcore." It is a medication. It's the reason that

NOAH IS 20 1/2 WEEKS SEIZURE FREE

His speech took a leap in the past two weeks. He's laughing. He actually wore my IPOD today and was singing with the songs. He dances, runs, jumps, teases and carries on conversation now. He is happy. I am hopeful that this will continue.

If you know anyone with a child that has epilepsy...... call them, talk with them, love them, visit them. Make sure they get to go on a date with their spouse once in awhile. Love the child and see through the epilepsy. Pray for them. Most of all, be their friend. If they aren't calling you and showing as much energy as they used to.......... be understanding and be willing to call them. Help them stay positive. Take them meals. Don't ask what you can do for them....... just do something. These are the things that were done for me and my family. I know that I would have broken without the support. Actually, I did break, many times. But, I never would have recovered and been able to keep going without this support.

In many ways, my family will never be the same. Seizures could still be right around the corner. I will never be the same (more positive ways than negative I hope). I'm grateful to my Father in Heaven for bringing me through the darkness and into the light over and over again from sadness to understanding and joy.