The VNS has been successfully implanted...PHEW!!

He did it!!! For Ammon it was fantastic although the anesthesiologists who wheeled him into surgery were quite harried trying to keep him on the bed as he kept trying to leap out. They were shocked he was still so agile and active after being given virsed to sedate him. I had forewarned them but who believes a mom?!? We arrived at the hospital at 5:30 AM as the hospital knew of his strong will and fight or flight instinct and put him very first on the surgical schedule. They had BUBBLES which helped keep him occupied and for the first time ever was able to have a blood pressure successfully taken while not in a seizure.

Ammon started to fall apart around 7 AM but by 7:30 was wheeled, albeit unwillingly, down the surgery corridor.

The surgery was completed just after 9 AM. As they took me into recovery I could guess where he was because I could hear him demanding "De Dow!! (Get down)". He wanted out of the bed. He pulled out his IV and blood was spurting. (He had torn off the ID bracelet before he he even made it surgery. Thats my boy!)

Since he did so well physically and there was no way to keep him in a bed, they allowed us to take him home. He was feeling safe enough in the car to finally relax and sleep much of the way home.

He has two two inch incisions on his neck and a three inch incision just above his left nipple. You can clearly see and feel the round VNS device implanted there. Honestly, it is quite creepy for me to see and feel but glad to have it. There are quite a few stitches and the bandages there are to be kept on for 7 days. HAHAHAHA! We didn't even make it into our driveway before the bandages came flying from that back seat into my lap. I've now rebandaged and wrapped him up in ace bandage to keep him from getting it off and bothering and bursting open those stitches. It will be a challenge to keep up with him.

We sure felt all your prayers. We felt every one of them. Truly it helped. We love you our friends and are so blessed by you all. Big hugs and kisses out to you!! We are exhausted and are staying home bound and Ammon centered for the next few days. It will test all my ability to keep him quiet and safe. Hoping baby Aaliyah will wait until atleast next week before she shows her glorious little self.

We go back up on 9/2 to have the device turned on and we are so anxious to see if this device will change his life. And ours!

Ammon's Surgery is 8/10/10

We have seen the neuro-surgeon. He has confirmed that Ammon is not a candidate for specialized surgery to remove the sparking parts of his brain to control his seizures. There is too much damage in too many places. Oh, our little son.

Ammon will now have a Vagus Nerve Stimulator (VNS) implanted next Tuesday, August 10th. It will not be turned on for two weeks to ensure that the nerve has a chance to repair from the surgery and make sure the wound does not become infected. If it becomes infected the device has to come out. That gives us time to have the implantation, come home for baby Aaliyah's arrival, get the kids back to school and then back to Primary Children Medical Center before the end of the month.

Ammie has four loose teeth and we went in today to have them pulled so that if they have to tube him during surgery the teeth won't get knocked down his throat. As things go with Ammie, he was having none of the lying down and helping the dentist so he has to go in Monday morning for sedation and then trying again.

We are hoping for the best. In 50% of patients the with the VNS they have a 50% reduction in their seizures. Twenty five percent see more than a 50% increase. The last 25% will see no improvement at all. We are keeping our hopes we will be among the successful 75%.

I'm going to paste here a description of what the VNS is and how it will work.

Vagus nerve stimulation therapy is another form of treatment that may be tried when medications fail to stop seizures. It is currently approved for use in adults and children over the age of 12 who have partial seizures that resist control by other methods. The therapy is designed to prevent seizures by sending regular small pulses of electrical energy to the brain via the vagus nerve, a large nerve in the neck.

Vagus Nerve Stimulator

The energy is delivered by a flat, round battery, about the size of a silver dollar, which is surgically implanted in the chest wall. Thin wires (electrodes) are threaded under the skin and wound around the vagus nerve in the neck. The battery is programmed by the health team to send a few seconds of electrical energy to the vagus nerve every few minutes. If the person with the system feels a seizure coming on, he or she can activate the discharge by passing a small magnet over the battery. In some people, this has the effect of stopping the seizure. It is also possible to turn the device off by holding the magnet over it.

Side effects of VNS therapy are mostly hoarseness and, sometimes, discomfort in the throat. There may be a change in voice quality during the actual stimulation. Although complete seizure control is seldom achieved, the majority of people who use VNS therapy experience fewer seizures. In some its effectiveness increases with time, and patients report an improved quality of life. As with surgery and the ketogenic diet, it will almost always be necessary to continue anti-epileptic medication although the patient should be able to take less medication than in the past.

I've lost my patience with waiting.......

I tried to be patient. I really did. But when we still hadn't heard back from the neurosurgeon about Ammie's MEG. I called again and left a message that we were highly discouraged and felt that nobody was advocating for my son.

It just irks me that in the time that it has taken to get the MEG scheduled, administered, reviewed, and then share with us a BABY has been conceived and will be born. Is that not ridiculous? And we paid $20,000 for this test back in January. Wait until we have another layer of government to go through. This system has problems!

The nurse called me back and shared with us that they all care and that the pre-surgery consult has already been scheduled for 8/9/10. Uh, that is true because when I was seeing the neurologist on 6/18 I had a strong feeling I better make an appointment for Ammon with the neurosurgeon just in case he forgot about us. I MADE THE APPOINTMENT as a worst case scenerio. So lets say that at the appointment the surgery is given a green light. When can we have it? School starts for all my children on 8/16. Then baby Aaliyah is due to arrive on 8/22. When will this happen? We kept all summer open to have this done. Feels like being in adoption limbo not being able to plan life because you just don't know when the light will turn green.

Right now my husband and I are really leery of having any of Ammon's brain removed if he chances losing any of his language and intellectual functioning. What good is having a seizure free brain if you are unable to communicate with people? Right now he can understand most of what we tell him and he tries hard to express himself. If he loses all that, it would be tragic. He is already developmentally a two year old. We can't take any more of that away from him.

So we disheartendly continue to wait.

Basics of Ammon's MEG test on 6/18/2010

There are two major clusters of seizure activity in the left median and frontal areas of Ammon's brain. And he also has some transient seizure activity on his right side. Of course the neurosurgeon is at a conference in Cleveland but the file is on top of his desk ready for review upon his return.

The seizure clusters are right in his language areas and also other high functioning cognitive areas so they will very carefully review the risks of removing those parts of his brain.

We are on track for having surgery or the Vagal Nerve Stimulator implanted before school starts and the baby comes. Keeping fingers crossed we stay on track. Still don't have specific times for surgery but we are getting closer.

Ammon's MEG results are in!!

AT LAST. After nearly 5 months of waiting (it will be 5 months on Saturday), Ammon's MEG results are in. I got a call from our neurologist's nurse not but 5 minutes ago. We have an appointment with him on Friday and are leaving tonight to fit in all day an Shriner's tomorrow with Caden and Lan and then Friday at Primary Children's with Ammon. Hoping there will be enough time for the neurosurgeon to consult with our neurologist before Friday at 9 AM so that we don't have to make another trip up and WE CAN PLAN A SURGERY AND GET ON WITH OUR LIVES. So we can give Ammie his life back.

The nurse tried really hard to give us some news of it over the phone but said she couldn't understand any of it and will have it leave it to the doctors.

THE BOY WHO SEES RAINBOWS

Knowing Ammie has changed the way I view the world. Did you know that we are surrounded by rainbows? I had never noticed until Ammon came into my life and made me aware of the colors that permeate our world.

Ammon can see the rainbows in a bag of marbles, in any water, in the twilight sky and in his dreams. I can tell the latter because of the giggles that emit from him during his sleep.

Here is a child whose mind is literally filled with storms, storms of electric energy that interrupt his brain and cripple his life BUT he sees the rainbows. What a gift for him, for us.

The other day I had to reprimand him and I hurt his feelings. His face crumpled, the weeping began. And through his tears he beseeched, "Ammon rainbow....where is it? Where is it" He needed a rainbow to bring him some happiness. May I always look for the rainbows.

Now, if he could help us find the pot of gold at the end too....

AMMIE KNOWS HIS LETTERS

AMMIE KNOW HIS LETTERS!!! This was one day I never thought we would see but alas, miracles happen. Its like a light just went on in his brain injured head and the alphabet makes sense to him. All the hours spent over the years practicing writing them on the steamed up bathroom mirror is paying off.

Not only can he recognize them (although K and X are ones the seems to be extra tricky and mess him up sometimes) but he can write them. The letter "E" has about 5 extra lines in the middle but...LOL!~

Still no word on... his brain mapping test. We got the $17,000 bill 3 months ago...still no results to report

Ammie's Biff and Barf at Costco last night

Once again, the seizure monster barged in and took over our life.

Daddy was at work and the kids have cabin fever so we decided to jump in the truck and take a trip 45 miles (and thousands of feet lower in elevation), to the southern city of St. George where spring is beginning to unfold. It would give me a chance to pick up some staples at Costco and after dark we would go to the Dollar Movie. Cedar City has neither of these and on our budget precisely where we can most afford to visit. We were also hoping for an afternoon at the park.

I should have seen the signs that maybe things wouldn't be as planned when it started snowing soon after we left. While it wasn't snowing when we arrived in St. George it was pouring down rain. We did some shopping and ended up at Costco about 5:15 PM. We squeezed our way through the concessions line and loaded up on pizza slices, smoothies, frozen yogurt and hot dogs. Those hot dogs. You know those mega sized hot dogs. Ammon ate one and a half and much of a smoothie. He was IN HEAVEN!

We zipped around and got our oversized toilet paper bundle and other Costco prizes and made sure to take a trip to the restroom where everyone was ordered to use the bathroom. Ammie shuffled into a stall and as usual needed my help to unbutton his pants. I stood behind him as he tried to go and felt him start to crumple. I was able to catch him as he was toppling face first into the toilet.

Heretofore, I have kept my radar out for possible drowning sites for Ammie in the face of a seizure. The toilet has never been on it. Now it has been added to my danger list.

I didn't want to lay him on a bathroom floor and scanned the room for a better option. I spotted the diaper station and yelled for Shayna to pull down the table. I laid him down and assessed his breathing. As we spoke to calm him a woman came out of a stall and kindly asked if she could help. I told her I thought we would be okay and she let me know she was a nurse and if I needed anything to let her know. She gave my shoulder an empathetic squeeze as she passed by me towards the door. No sooner had she exited then Ammie started choking and then let loose with projectile vomiting FULL of chunks of hot dogs out of his nose and mouth. I quickly turned him on his side and screamed for Shayna to find the nurse who just left the bathroom.

The vomit kept coming and coming and I was wiping his nose and mouth as quickly as I could. The nurse was quickly by my side making sure he was breathing and not aspirating the vomit into his lungs. Before Shayna could get back from the truck with Ammie's rectal diastat to help stop a seizure, he rolled his eyes and was back with us. I peeled off his retch covered shirt and asked Caden for his jacket. We wrapped him up and carried him out to the car and secured him into his carseat.

With eight children somberly buckled in their seats I sighed, "Sometimes its really disappointing isn't it?" I didn't need to spell out that there would be no movie tonight. They had already guessed that as Ammie started dozing off in his post dictal state clutching the jumbo box of his beloved Goldfish to his chest.

Once at home Ammie wanted to cuddle right up in his newest treasure. One of the CHIWaitingkids listmates made the most cozy Scooby Doo blanket in bright teal and orange. It arrived in the mail just a couple of days ago. I could tell his world was still spinning as he tried to find a place that felt safe for him. He started on my bed, then his little bed next to mine, then the floor. His body was warning him in needed to stay low, stay in a place where falling in a seizure would keep him most safe. All the while he dragged his new blanket from spot to spot and then finally felt safe enough to fall asleep for the night wrapped up from head to toe.

It is still another two months before we can anticipate the results of his MEG and MRI.

Ammon's Sedation MRI

Alas, the test is DONE and Ammon did pretty darn good, all things considering.

He doesn't like those darned rules that he can't eat before these sedated tests but we made it through. We got the the hospital about 11:30 AM and waited for him to be called back to be evaluated and then sedated. He just hates those tiny rooms and does all he can to escape. Thankfully I had called the nurses beforehand and warned them about how much fun Ammie could be while trying to sedate and test, so the nurses were ready for him.

When Ammie saw the big IV needle come in the room with his nurse, he uttered a loud, "UH OH!! Poke! Poke!" But he sat calmly and carefully watched as the nurse gave him the poke. The nurse smiled and assured me that he would be asleep in five minutes. At eight minutes of Ammie screaming, "Ammon de dowww!!" (Ammon get down)the nurse thought perhaps she needed to go get more meds. She came in with more and inserted it in his IV tube. Still, Ammon screamed and struggled to get off the table. At about minute 11 they gave Ammie another dose and in the middle of shouting "Ammon de doww" his mouth froze in an o shape and he was out.

They rolled him down the hall and into the imaging room. They assured us that he would be just fine and for us to come back in 45 minutes so that when they finished at 60 minutes we'd be ready and waiting for him in recovery. Makayla and I went to eat lunch and came back in about 30 minutes....just in case...and sure enough as we walked down the hall to imagining we could hear a scream that sounded very familiar!

We turned the corner and saw the tech with a helpless look on his face trying to hold on to a squealing, squirming Ammon who woke up inside the machine. They gave him another dose of sedative. Didn't put him out. Gave him another dose. Magic. Ammon went out and then was rigged back up and put inside the MRI machine.

Once in recovery Ammon decided it was fine to sleep and then he wouldn't wake up! Finally, we were able to rouse him enough to get him walking with help and able to take him home.

But its done. We got er done.

~~~~~~Its a 7th Birthday Party~~~~~~~

SEVEN is HEAVEN. And so is a birthday party for our boy Ammon. Each arrived at birthday is a blessing that we know we can't take for granted.

We started out the day up with the birds. Then it was a dip in the much adored hot tub. This is one of Ammon's favorite activities. Today is also our hot tub's birthday. We bought it four years ago on what turned out to be Ammon's birthday...and that was two weeks before we realized that Ammon was our son. It was just meant to be.

Then is was a trip to Walmart to pick out balloons and pinata candy. If ever you want fun, just take 5 of your children to shop with you. Those with 5 kids clearly know what I mean...LOL! We had the balloons filled at the Service Counter. They made it ONE STEP away where the bracelet they made on Ammon's wrist came undone and off they floated to the very tall ceiling of the store. Bye, bye balloons! Ammon was distraught so back to the Service Counter we went.

At home it was cake, candles and candy. Ammon has been practicing blowing out candles for days so he was quite startled and delighted when the candles lit themselves again. Those relighting candles can seem like magic! He must have blown them out for 5 minutes but is ready to blow some more.

He got a Smart Cycle where he pedals a bike that is hooked up to the TV. He has to catch stars and letters and help Dora save the day! The faster he pedals the faster he goes on the screen. The more he pedals the faster mom hopes he wears himself out. Maybe we could get a full nights sleep!?!??!?! Ammon now gets up between 3-4 AM and while he seems fine with that it is killing his mother and father. UGH!

The party will continue at Applebees tonight and then the Bouncy House on Thursday when we go to Salt Lake City to play with the big brothers and sisters. Ammon has his sedated MRI on Friday at Primary Children's Medical Center. Wish us luck on that front! Lan and Caden have Shriners the following Monday so it is nice to be able to do it all in one trip.

We love, love our Ammon and thank him for reminding us what is important in life. That is to look for the joy in every tiny thing and to be grateful for the time we have with each other. Ammon was sent to earth with his suitcase full of happiness and he shares that everywhere he goes. Happy, happy birthday little son. May you please be here to see number eight.

Ammon the Love Bug

He came home with his Valentine stash today. He hasn't a clue what it is all about but you couldn't find a better love bug every day of the year.

His birthday is coming on Monday. He's not sure what that means either BUT he does understand his party with be at the bouncy house. Every day Ammon says his prayers. It is always, "Ammon bounce Makayla. Ammon bus seatbelt. Seizure. Amen". Notice the order of the requests. He just wants to bounce and making sure God remembers too.

When Ammon seizes...

This is Ammon when he has a seizure. He doesn't even recognize this as himself. He keeps telling me this is a picture of his brother Caden. Often we have alot of contracture in his face and his left eye starts winking and the left side of his mouth grimacing.

ABC Good Morning America spotlights MEG test

This was on this morning. We can only hope for success like this lovely young woman has had.

http://abcnews.go.com/GMA/MindMoodNews/sixty-seizures-brain-scan-detects-source/story?id=9730383&page=3

MRI scheduled for 2/19/10

Ammon will have a full sedation MRI on 2/19/10. It is a specific MRI that matches the points on the MEG we just completed so they can construct the 3D image of Ammie's brain. This will be at Primary Children's Hospital in SLC. On Monday 2/22 Caden and Lan have treatment at Shriners which is a stone's throw away from Primary Children's. So, we'll spend a long weekend in SLC getting kids to the doctors. Maybe we'll get lucky and be able to join a Chinese New Year party somewhere.

Ammon's stash!!

This is what Ammon earned from enduring the MEG test. He was able to go "bounce" and then play some game to earn tickets. He earned all these 243 tickets himself! This boy has SKILLS!

Ammon pulled it off...literally and figuratively

Oh my little son, the survivor at all costs. You know, bless his determination to NEVER give in because it has kept him alive but he about did us in. I thought I knew stubborn before I parented Ammon. The things this child teaches us!

Tuesday night he was able to stay awake until about 3:30 am. I let him lightly sleep until about 5:30. I'd keep shaking him awake and he handled that better than I anticipated.

When we got to the Neuroscience Clinic at the University of Utah at 8:15 AM, he could hardly put one foot in front of the other. They took us into the MEG room and began to prep us for the test. Makayla went with me and we both had to change into scrubs so we wouldn't have any metal going into the MEG room to decalibrate the machine. He had to have over 30 electrodes embedded in a special swim cap like device glued onto his head. He was not impressed. By the time we finished, I was covered in the glue too but by golly, it was on his head! I have a small part of this on video and will try to download it here. I've never tried this before but watching it will give you a better feel for the fun we were having!

We went into the small MEG room and Ammon was having NONE of the laying on the bed scenerio. He wanted OUT. He has always become hysterical and highly panicked when in a little room with the door shut. That hasn't changed. He continually kept screaming as he squirmed, "Ammon bounce! Ammon bounce!" Makayla had taken him to a play center with bouncing toys the day before and we was wanting to bounce again. He continued to pull at his hat and electrodes.

After about 25 minutes of screaming he changed his strategy and used his very best manners and plead, "Peaz Ammon tome" (come, which in fact means to him "Please let Ammon go"). "Ammon off, off peaz" (let Ammon take his hat off please) This was the most heartbreaking part of all. Finally, Ammon cracked and crawled under the MEG gurney and sobbed himself to sleep.

Ammon had been given a sedative which they told me was about the same as slipping him a Mickey. It helped enough to allow us to move him up onto the gurney and slide his head into the multi-million dollar machine. It was then discovered that a ball he had taken in with him had metal inside it which demagnetized the machines. Thankfully, they were able to pull the gurney out of the machine without waking him up and recalibrate but that took up 20 precious sleeping minutes.

The test requires 50 minutes of data to be able to be usable. They really wanted at least 60 minutes. But at the 52 minute mark Ammon pulled himself out of the machine and loudly demanded, "Ammon bounce!!!" Thank goodness you all prayed those angels into the room who kept him asleep with two extra minutes even. We know that we saw at least one brain discharge recorded on the computer. We sure hope that there are more. His complete brain was recorded but at one time we could only see on the screen one of the 12 parts of the brain being simultaneously recorded.

It will take 3 MONTHS for the results to be known. Only one person can read the test and he is gone for the next month. Then it takes 2 months to build the 3D diagram of his brain using the data. Ammon will need to have another MRI but he wasn't in any way able to withstand that yesterday. We'll get to go through this fun again in a regular MRI.

Ammon still has a head full of glue after 3 shampooing but he is doing well. I was able to get a good night sleep so I'm doing better too! Thank you all so much for your help and your love. We could truly feel it!

Getting ready for Ammon's big test on Wednesday

Its almost time for me to take Ammon to the University of Utah for this much awaited, most worried over specialized testing of his abnormal brain. As Ammon was awake, alert, and actively jumping off the bed at 3:30 am this morning…again….I got really anxious about what is about to happen in the next 72 hours.

Depending on the weather, we make the 4 hour drive to Salt Lake City on Monday night or Tuesday morning. I’ll do my best to tire him out so he takes a late nap on Tuesday and then its party time as we try to keep him awake from 10 PM Tuesday night until they put his head in the Magnetoencepholography (MEG) machine for 2-3 hours. Heaven better help us because if it doesn’t we are in big trouble! Ammie can’t sit still under calm conditions and due to his early history he becomes hysterical when restrained. If you believe, help call some guardian angels to come play with my boy Wednesday morning and keep him still!

On Tuesday night my 21 year old daughter, her fiancé, my 22 son, and I will all take shifts having a Teletubby dance party, car races, Little Einstiens, Diego and Dora video marathon and anything else we can think of to keep him awake. It will not be pretty! And I’m just talking about ME…LOL!

But perhaps finally, the part of his brain to makes him fall to the floor in uncontrolled seizures can be mapped and localized. Our greatest hope is that surgery will be an option and that blasted part of his brain can be removed. Who would ever think you would pray for brain surgery as an option for your child?! But, we are. We thank all of you for doing the same.

The MEG test is on 1/20/10

And we finally have a confirmed date of Ammon's magnetoencephalogram (MEG). He will have it done at 8:30 am on 1/20/10. He must go in sleep and food deprived so no food or sleep after 10 PM on 1/19. Can you only imagine what this is going to be like??? I can, and I'm shaken by it already. YIKES~! This is going to be painful for sure.

Ammon had to go in to the doctor yesterday for a medication evaluation. He is awake and ready to roll every morning between 3-4 AM. It is killing ME! He demands that I be up and about with him. This is certainly not my sleep cycle. Anyway, the doctor tried to tweek his medications so that he can sleep but he is on so many that there isn't much that he could do. In fact, our doctor confirmed that an adult with severe mental illness is on lower dosages of the meds Ammon is on. Somehow he just metabolizes medicine at a voracious rate. He is on melatonin at to get to sleep and that has been fabulous but it doesn't keep him asleep.

We are so utterly grateful to all of those who have helped us with your encouragement, prayers and dollars. We could not do this without you. Truly, we could not.

Stefani