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!
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6 comments:
This is SUCH good news (so far!). I am SO thankful that it went as well as it did. Thank you for posting such detail, Stef! I've been anxious to hear! SOOOO happy you got some rest, too, Girlie!! Lots of love from Colorado. XXXOOO, -Holly
Praise God for 52 minutes of sleep! I hope Ammon will get the chance to bounce again really soon!
I have been thinking about you all day today! Thank you so much for posting and keeping us updated on our boy! He is so loved by so many....and so is his mama!
What an ordeal Stefani.. so glad you 3 pulled it off.... yay for Ammie!!
OH happy day Stefani! Such good news that you were able to get what you did! Thank you for checking in and sharing with us. You are all loved so much!
Tina and her boys
I'm glad it was accomplished even if not easily. I hope you all goes well for the regular MRI. Hopefully this will reveal a way to help Ammon be all he can be.
It's hard to read this and not have images and memories come flooding into my mind of all the times we went through similar things with my son when he was Ammon's age (He's now almost 19!!!) He would start to yell "See Ya! Bye!" as soon as we walked into the lobby at Primary Children's. He hated the tiny rooms so much that it was all we could do to get him into a classroom at church because they reminded him so much of the hospital. I would almost wish they could put him out just to draw blood. It was miserable. But it's amazing how you can feel the faith and prayers and hope coming from family and friends through the walls of the hospital and how you can feel their strength and power. It's so nice to hear that our prayers have been answered. I remember that for my son's surgeries I would hear how people from several different neighboring towns had prayed and even fasted for him; they were from different religions and backgrounds, but they all came together in faith and love for my son. It was a very humbling and amazing experience. Thanks for including us in Ammon's life and letting us get to love him too.
Alicia Bird
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