Ammon's insurance woes......

And while this is generally the time of year that we shout out, "Ho, ho, ho!" I am at the point of "Woe, woe, woe!"

Because he is considered disabled, Ammon qualifies for Medicaid. Medicaid absolutely WILL NOT approve the expensive MEG test of Ammie. The insurance we have will NOT approve the MEG test for him without a full blown appeal. An appeal will take at least 2 months from past experience.

Well, yesterday my husband called from work to share that his company is CHANGING insurance providers on January 1st. So, even an appeal is useless because in two more weeks we will no longer have insurance with the provider we are currently battling with.

Good news? Yes, there is some. The new insurance provider WILL cover the test without any appeal. We are tentatively scheduled for the test on 1/5/10 just needing our new policy number to confirm. However, this new provider will cover NOTHING...no copays, no ER visits, NOTHING until we pay the first $5,000 OUT OF POCKET. Then they will cover everything. So here we are back to worrying about money once again. I was so confident we had this problem solved and it is looking us in the face again. Once we get the $5,000 paid then he can have his brain surgery or the VNS and that will all be paid for.

My Chip-in is still up on his blog so if those of you who couldn't help before want a chance to help now, you can. His blog is:

http://www.ammonsadventures.blogspot.com

We are back to needing a Christmas miracle yet again. We had so many people come forward to help at our last request for help. We are extremely grateful!!

Stefani

Ammon sees Santa and wishes for SURGERY

Okay, maybe Ammon really wants Little Einsteins or Dora toys but Mom wants surgery! We are waiting for the schedule date for his magnetoencephologram (MEG) at the University of Utah. Hoping we can get it done BEFORE Christmas. If the MEG shows a specific area that can be removed in his brain to stop the seizures, they will do brain surgery. If the MEG can't find a focal area, he will have the Vagal Nerve Stimulator implanted. We are so hopeful the new year will bring Ammon a healthier year.

Ammon's Hope!!

Ammon is this sweet boy's name. Ammon has THE BEST SMILE. Ammon has THE BEST HUGS. Ammon also has epilepsy.

Ammon has debilitating and life threatening seizures that have damaged his brain and threaten his life. Countless different medications in the past 4 years have not been able to control his seizures. Ammon is 24 times more likely to die a sudden death than his little friends his age. Each time Ammon has a seizure he risks dying, just like Jett Travolta did. Recently, Ammon had a seizure and nearly drowned while playing in a creek 5 inches deep.

Ammon has hope that his life can be changed by having a Vagal Nerve Stimulator implanted around his vagal nerve. It will be like having an electrical pacemaker for his brain. It will be like giving him freedom to have his life back.

As Ammon's worried mother, I have set up a Chip-In account for those who can help us help him gather the funds necessary for this surgery. I know that his smile and his story has touched so many of you. Please take this chance to touch him back.

ABOUT THE VNS

One of the most exciting developments in the field of epilepsy treatment is the Vagal Nerve Stimulator (VNS). The VNS is a device about the size of a hockey puck, which is placed in the chest in a manner similar to a pacemaker for the heart. The surgeon then wraps its lead wires around the vagus nerve. The vagus nerve is unique among peripheral nerves of the body in that its nuclei begin in the brainstem (the lower part of the brain) but its peripheral nerve traverses a large portion of the body (neck, chest, and part of the abdomen). The other nerves that begin in the brainstem only go to portions of the head and neck.

Once implanted, the neurologist will program the VNS to deliver a series of stimulations to the vagus nerve at various strengths and frequencies. The VNS does not work by sensing a seizure. Instead, it works by repetitively stimulating the vagus nerve for a period of time and then by pausing for a period of time. How this achieves an anti-epileptic effect is unknown but the best explanation this author has heard of is that the device clearly scrambles some of the synchronous discharges of the brain. Since seizures are synchronous discharges of groups of neurons in the brain, then scrambling them periodically may serve to prevent the recruitment phase needed to begin a clinically recognizable seizure. The VNS device can be used for both partial and generalized onset seizures.

The VNS is also programmed with a special sequence that is activated when a magnet is swept over the device. For patients who can sense the start of a seizure (the aura of a seizure), it can be useful in aborting the seizure. For patients who cannot sense the impending seizure, it can be useful for family and caretakers to shorten the seizure and allow for faster recovery of the patient.

Summer in review

We did a very bad job of keeping our blog up to date this summer. Here's some pix to share the fun we had.

Ammon's first day of kindergarten 9/1/09

Our boy is off to kindergarten and the beginning of the next 15 years of his life (should we be so blessed). Since Ammie has intellectual delays he will get to go to public school until he is 21.

He was so very excited that he has been wearing his backpack since Friday! He did great and can't wait to go back tomorrow. I'll post some pictures.

Ammon's near drowning on August 5, 2009

I will never get used to these seizures of Ammon's. He has a major one at least once a week and still, my heart races with worry and anxiety.

This afternoon I dropped Taisha off at Chinese class and took K, Caden and Lan to the canyon park. Its a lovely oasis and my kids love to go here. It has a tiny stream that is rocked and cemented over that runs through the middle of it so kids can get in and cool off. I watched Ammon get in and squeal with glee as this is his favorite thing in the world. The water only comes to just about his shins but it does move with some force. I had my Blackberry and was checking email. It hadn't been more than 5 seconds since I watched Ammie and I heard Lan scream, "Ammon's down!"

I had been sitting on the bank and it took me about three big steps to get in the water and to him. He was having a seizure and had gone down face first. His face was completely submerged and the water was pushing him down stream. I frantically pulled him out and he gasped for air. By the time I had him laid down on the grass a male nurse was by my side assisting me. I could hear people in the background shouting, "I know CPR. Do you need my help?" Obviously they figured the seizure they were witnessing was due to a near drowning. K ran to the car and got Ammie's diastat and we administered 10 mgs. Ammie's eyelid, cheek and ankle were rubbed raw by the push of the water into the rocks and cement of the ditch.

Thank heavens the seizure ended and Ammon hadn't swallowed water. That is one advantage to not breathing when a seizure starts. I thanked the male nurse and told him he was an angel. He laughed and replied that he was actually from Pergatory.... That made me laugh too. He works at the local jail which is called Pergatory and he deals with alot of seizures but those are drug or alchohal induced.

I strapped Ammie into the car and was so rattled still that I backed into a car parked behind me and scraped up her hood and put a big dent in it. She was very kind as she had just witnessed the whole scene in the stream. PHEW. I got home and Ammie dressed in jammies and asleep and decided to calm my nerves and eat...and broke my tooth! At this rate I'll fry my computer before I finish this email. I think I will just put myself in bed where nothing much else can go wrong.

Everbody needs someone to love them....

Aaron is well. He is back to school and no one else in the family succumbed to that blasted SWINE FLU but him.

We did make another trip to the ER today. Ammon started summer school on Monday. This is a new school for him as its where he will transition to kindergarten. He kept telling me, "NO!" when I told him it was time for school and I had to pry him out of the car and into his classroom. He didn't want me to leave him. Did he know something would happen?

I went to run errands and then got a frantic call from the school. Ammon was having a seizure. They had given him his first dose of rectal diastat and he was still seizing. As I'm talking to the panicked teacher I rolled through a stop sign and got pulled over. I rolled down the window and shouted out before the officer even reached my car, "Officer, my son is having a seizure! Would you like to escort me to the school and ticket me there?" He replied, "No, Ma'am, you are free to go".

When I arrived at the school he was still seizing. It had been 30 minutes total. I administered a second dose of diastat, bundled him in the car and zoomed to the ER where they escorted me immediately into a room. After 50 minutes, oxygen and more meds he finally stopped. That is so long to be compromised and for his brain to be misfiring.

The aides at the school were shaken and remorseful. They promised to never again let him go on the swings. I reassured them that its not their fault and explained that this is Ammon's life. This is all that he gets. And by damn it will be one filled with every sweet joy of childhood. Let him swing. Let him LIVE.

It was the same with the startled workers at Home Depot the other week when Ammon seized and face planted straight onto the cement floor and lay there bleeding from his nose and mouth. He will go to Home Depot again. He loves that store and there is still much for him to explore.

We had a new nurse today in the ER and she asked about Ammon's medical history. Again, we had to explain that we know nothing of his birth history or first years of life because he was abandoned. The nurse got teary and returned, "Oh, he is such a handsome boy. What you have done is a very good thing. Everyone needs someone to love them."

I have thought about that all day. I know what she meant, and I recognize that he is very blessed to have a family but I keep thinking that when it comes to love, Ammon is the teacher. He is the one whose face lights up like a billboard every time he sees people he loves. Even if he last saw you 5 minutes before! He is the one who makes sure everybody has been hugged and kissed before bed and multiple times during the day. Each of us needs Ammon to love us. Its a very good thing what we have done.

Stefani Ellison

Some of my girls at Red Cliffs. Shayna edited this pictures because she got bored. Didn't she do a great job?

Happy 6th Birthday Ammon!

Usually when Ammon gets a hold of a bat, the world has to run because no one and nothing is safe! But today he has permission to swing all he wanted at the birthday pinata and he was ONE HAPPY BOY! He gathered up all the candy after the pinata burst, wanting so badly to do it again.

Christamas 2008