Ammon's 411 after his 911

Can you call something you don't want to experience an adventure anyway? You know that we have named Ammon's blog
http://ammonsadventures.blogspot.com

We just didn't know when we named it that just how exciting this journey would be!

On Friday afternoon Ammon had a seizure...a long and significant one. When he couldn't come out of it, we took him to the emergency room here in Cedar City. Nearly an hour after going into a full tonic clonic (they used to be called grand mal) seizure, he finally was able to come back to us. The valium and oxygen helped relax him to get oxygen to his brain and then his brain could come back into sync. We were sent home with our very own oxygen tank so that perhaps next time this happens we can help him immediately as the seizure begins.

Our dear boy has had quite a weekend. Can I just tell you that his survivor instinct is strong and right under the surface. This child will not go down without fighting it tooth and nail. He is a FIGHTER. To put him under sedation for the MRI he had the IV meds (we had a failed MRI atttempt earlier when they tried to sedate him orally. He woke up 1 minute into the MRI and would not stay in the MRI machine. So this time, we knew he had to be sedated with an IV. Even at that it was a nightmare.

He was given enough meds to get him to sleep which was quite a large dose as compared to most children. Then I carried him to the MRI room and when we tried to put him on the MRI bed he woke up and was not having any of that. They ended up giving him three more shots of the sedative until he was out enough to secure on the bed and send into the machine. He did great then! He was in the machine for about 30 minutes as I stood next to the machine keeping watch. The tech came in and said that we were almost done. We just needed to shoot the contrast stuff into his IV and send him back in the MRI machine for another 5 minutes.

Well.....5 minutes, HA! He got the contrast in and the tech pushed the button to get him back in the machine and it woke him and he became frantically hysterical about being in that tiny space. Remember how much he likes elevators, small rooms, doctor's offices, etc? He was able to Houdini out of his papoose and aqs he is clawing his way out, I'm trying to grab him from crawling out the back end of the machine and the magnetic force pulled my glasses off my face and my glasses shot through the air like magic and whacked Ammon right in the middle of his face. Poor boy had it coming in all directions.

After three more doses of sedative he was safely back in the machine and in another 10 minutes the MRI WITH CONTRAST was completed. We were exhausted!! But they were able to get really good scans of the cyst. This will really help. His blood work was concerning. He needs much more medicine as his valproic acid level was much too low. The dose has been increased and we'll go back to our hospital on Friday for more blood work to see if his levels are stabilizing or if the dose will have to be increased even more. They did find he has a sinus infection and we are now on anti-biotics too. How much fun we have trying to get his medicine down him!

We did go to Dairy Queen that Ammon has never visited and the closer we got to the door the more apprehensive he became and started backing back towards the car. Poor fella thought we were taking him to another doctor. We had to carry him in and he wasn't fine until he could see french fries on someone's table. PHEW.

We wanted to make sure that we had family pictures done on Monday as we had all the children together for the first time since Ammon came home. Monday was the first anniversary of Grandma Ellison's burial so we were at the cemetary to put flowers on the grave. Our children were concerned that there were children buried there who had no flowers on their graves so we spent some time taking our flowers to those children so they could be remembered too.

We are just waiting now for more test results and scans to be read to know what will happen next. So, we can just schedule day to day and not too far in advance. We just don't know yet what is coming down the pike. Thank you so much for all your prayers and concern. I was calling on all your prayers while he was trying to escape the MRI machine and I'm sure glad you heard me and we were able to finish that.

You can see some pictures on the blog of the weekend. He sure loves his big sister Makayla and she is still completely smitten with him.

Primary Children's Hospital tomorrow

We have been told to be to Primary Children's Hospital in SLC tomorrow morning at 9 am for more testing. While they have Ammon sedated, they will also draw blood. Thank heavens they get to draw the blood while he is out cold. Our neurologist while be ready to review the tests after the holiday. So, we aren't sure when we will be returning to Cedar City. My children will be out of school as of this afternoon so we'll all spend the first day of summer vacation in the hospital. HOW FUN!

Terri will be back in the office on Tuesday morning, as we are closed on Monday. I'm just not sure when I'll be back in.

We did have more good news yesterday when we got to see our son Junior receive his high school diploma. Some of you may know the struggle it was to get him through the last few months of high school as he decided he needed to learn some life lessons the hard way but lessons have been learned and a diploma bestowed. AND with his graduating with the highest GPA in his class....LOL...this cracks us ALL up but an honor we will chuckle about with him for the rest of our lives.

I've attached some photos of him in his caps and gown and with his siblings. In the one group picture Makayla is missing because she was still working on her HAIR.

We'll give you an update when we know better next week what our schedule looks like but keep those prayers for our Ammon. So far they are working and the news has been the "better scenerio". We want more "better scenerio"!

Ammon's diagnosis

We were able to learn today that Ammon has "an arachnoid cyst in the left middle cranial fossa" of his brain. It is 4 centimeters in size. It is very likely congenital and could very well be the cause of his seizures. It is 4 times more likely in boys and it is common for symptoms to start appearing when the child is about 1 year old. Interestingly, Ammon was abandoned when they estimate he was 14 months old. He had a seizure soon after entering the SWI so it is very likely that he started having seizures and his family couldn't or didn't know how to take care of him.

You have read our blog and know that Ammon has been such an interesting boy from the very beginning! He tested his (and our) limits pretty good and we just chalked it up to transitional stress, institutional behaviors, lack of experience and boundaries. Well, learning the many symptoms that are common with an arachnoid cyst in the left middle fossa reads like a checklist of the concerns we've stated on his Individual Education Plan (IEP) Let me share them here and you too will be able to see how this describes Ammon right on.

Headaches (we don't know if he has these but often will bang his head against a door or wall. Maybe this isn't just institutional behaviors but trying to tell us his head hurts?)
Seizures
Increased intracranial pressure
ADHD (a study showed a strong correlation with ADHD and affected children)
Developmental delay, including delays in expressive and receptive language, global delays in development
Behavioral changes
Ataxia (muscle weakness and problems with balance and coordination)
Auditory halluciantions or periodic paranoia

Hmm. I don't know about the auditory hallucinations and paranoia but that is the only one that isn't obvious he has. This would explain so much of behavior that we just couldn't figure out. So next time anybody describes these symptoms in their child I will make sure to recommend a CT scan or MRI!

We are waiting now to have our consultation with his pediatric neurologist at Primary Children's Hospital in Salt Lake City. I will keep you updated on our progress and just when we will be able to have his neurosurgery.

Again, we have been so touched by all the good wishes going out for him and are so relieved that it does not appear to be a cancerous tumor. Thank you everyone.

To Ammon's Army

I did pretty good holding it together until we had to sit our children down after they got home from school and share the news with them. Of course their first question from all of them was whether this meant Ammon was going to die. And now I feel like he should not walk up or down the stairs, stand on a stool, do anything without a big old helmet on his head.

We are worried about our son. We didn't "sign on" for a brain tumor/cyst when we adopted him. But we signed on 200% to be his parents and whatever it takes to help him, we are wholeheartedly committed. We are his family. He is our heart.

I hope I can show the same strength I have witnessed over and over by so many of you. I am positive that I will need your shoulders to help carry us.

As I came back tonight and read all of your supportive messages, I found myself reading them amid the plunk, slatter, plop of tears dripping off the bottom of my chin. Ammon has been not just my child but he has been CHI's child. There was so much advocacy from this group as it was time for his file to go back and no family had stepped forward. You all took him into your hearts and earnestly prayed him home. Little did any of us know it would be OUR home but what a fantastic surprise.

Once again, prayers are being invoked in his behalf. We have prayers from all faiths pouring out tonight for our little boy and I am so grateful. There are prayers in English, Chinese, and Hebrew. There are supplications from those believing in a myriad of religions and philosophies rising together to cradle him in their power.

Again, thank you for your encouragement. The outpouring for Ammon has touched us greatly.

Ammon has a mass in his brain

We learned this morning that our charming, irresistible, happy, determined and much loved Ammon has a mass in his brain. We aren't sure yet exactly what it is but were told it is likely an arachnoid cyst. This would be the good news. The bad news would be that it is a malignant tumor. We will know more after the doctors are able to review his tests and likely request more.

We had originally gone in to finally have his MRI done to see if it would show why his EEG came back showing that he has two different electrical currents on either side of his brain. To hear that they found a mass was something I was not prepared for today. It could prove to be good news in the end as if it is a mass causing pressure to his brain, removing it may stop his seizures. I never considered being told that my child having a mass in his brain could be any kind of good news. We will hold to the hope that this is the case and that finding it in the long run end up to be a positive. No matter what the mass turns out to be, they told us to prepare for him to need neurosurgery.

As the doctors tell you these things your mind kind of goes into shock. It felt like my own brain wouldn't allow the words to sink in. As a family we had watched this past Sunday night the TLC program "The Tallest Woman in the World" about Yao DeFen who lives in a very rural part of Anhui province, just where Ammon is from. They discussed the tumor on her pituitary gland and followed her travel to the neurosurgical department of the Hefei Hospital. We were so sad when there was nothing they could do for her because she could not pay the $4,000 Chinese dollar surgical fee (about $400 US) so they sent her home only equipped with vitamins. As we toured the hospital via the televison, I distinctly counted my blessings Sunday night that Ammon didn't have to be treated there for his seizures, as that would have been the hospital to treat him.

As the doctors relayed to us today about him needing neurosurgery I was so grateful that this wasn't diagnosed in China. That nobody knew about this mass. That Ammon didn't have to have surgery there. That his file didn't have been pulled because his need deemed too scary, too serious, too unknown.
So we have shed tears for our son today and know this is the beginning of many more. We'll keep our eye on the positive that perhaps this will turn out to be a huge blessing as they'll discover this will be the source of his seizures. I have often told my husband that Ammon is "lost in space" as his perceptions about his body in space seem to be off kilter. There isn't a thing he touches that he doesn't tip over. Now it is possible that his balance problems are real and not just chalked up to lack of experience and stimulation from his life in the orphanage and that they are linked to this mass in his brain as well.

We are so blessed by this son of ours and now we hope we can return the favor and help bless his health too. Please think good thoughts for our lovely boy.