Friday, January 29, 2010
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!
Thursday, January 21, 2010
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!
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!
Sunday, January 17, 2010
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.
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.
Friday, January 08, 2010
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
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