Merry Mayhem on Christmas Day!

Time for Christmas!

Its time for the annual Ellison Christmas letter. I know, you’ve been anxiously awaiting it to see how many children we have this year! Once again we won’t disappoint as we have Holiday news to share that our kids keep growing...and so does the number of them!!

On November 18, 2007, Stephen and Stefani celebrated their 12th wedding anniversary. On that very same day, they welcomed home their 13th child. They say that its cheaper by the dozen ( but I am here to tell you that is NOT true) so why not do better and make it a Baker’s Dozen?

We have just had the immense blessing of bringing home Caden who is 7 years old. He was born in China too. As you can see from the picture of him on Daddy’s lap that he has a fabulous smile. We think he is a wonderful addition to our family and we are SO GLAD HE IS HERE!! He and Lan have become quite a team and they truly enjoy each other’s company.

We also welcomed our first grandchild. Little Haydin Hill is a smart and happy boy and so well cared for by his Mama Katie. Auntie Sierra makes sure to take very good care of him too. Haydin will celebrate his first birthday on January 12th.

BRANDON was deployed in the Phillipines for a year and is now back safely. PHEW!! Since 9/11, he has also made it through deployments to Afghanistan, kuwait and Iraq unscathed. We certainly are proud of him and grateful for his sacrifices so we can enjoy our freedom. BRETT works as a mechanic at Nate Wade Subaru in SLC and just bought his first house! He is recovering from a broken tailbone...ouch! SIERRA is a receptionist for home Depot Installing and a very good oldest sister. Did I mention she is such a great big sister?! KATIE works at 1-800-Contacts but spends most of her time being a great mom to Haydin. SHE ROCKS! JUNIOR graduated from high school and is in Honolulu and works as a security guard for University of Hawaii...and likely chasing girls.

MAKAYLA is getting ready to graduate from high school next May and was named November’s Student of the month at school. We hope she chooses to attend Southern Utah State University because we just aren’t ready to have her leave us yet. ShAYNA is in the 9th grade now and really wanting a phone for christmas....Hoping Santa gets a wrong number on that one. She is definitely a talker. TAISHA is in 8th grade and our very much appreciated organizer. We owe our family sanity to her. ROBERT is truly searching for a way to attend clown school. He is always joking and making people laugh...even when he should be doing other things. He is a very kind hearted boy and he keeps us humored. AARON has finally agreed to take piano lessons and expand on his musical talent. We love listening to him practice. He always takes time to make sure people are happy and included.

CADEN just joined our family and he really loves to do art and be one of the kids. He has Osteo-genesis Imperfecta. You might have heard this as Brittle Bone Disease. It doesn’t slow him down but the trampoline is off limits. Next time you see us be sure to give him a hug...just not too hard though! SHAOLAN (LAN) is as girly as a girl can be. She celebrated her 6th birthday with the princesses at Disneyland. Anything pink, purple, or princessy is what she likes. She started kindergarten and LOVES it. She is learning to read and this is so exciting!!!

AMMON is the baby and even though he is four years old, he is still has a lot of baby left in him. He had a really tough start in life and didn’t get to experience much while he waited in China for a family. We knew he had a seizure disorder when we adopted him but since bringing him home last December have learned that he has a golf ball sized cyst in the left side of his brain. He also has a difference in electrical current to that side of the brain which causes his seizures. It also affects his language and he is just now learning how to talk. He gets PLENTY of exposure to hearing people talk at our house so it’s a perfect place for him to be!!

We finally did what we have been wanting to do for years and that is to buy some ATV’s. We bought 5 and like to spend time out riding. We have a trailer and our new ATV’s...now we just need the TIME to be able to enjoy them more. Anybody want to get together and camp this summer??

The kids, except for the 3 “littles”, will be learning to snowboard this winter. How many emergency room visits do you see in our near future?!?!?!? Oh well, the doctors all know us there by name anyway.

We want to wish you and your family a warm and magical holiday season. We thank you for being part of our lives and for cheering us on. We have been blessed so much and we are grateful for that. We hope you are able to count your blessings too. May 2008 be filled with love, friends and family.

All our love,

The Ellisons

Ammon's second opinion scheduled for 1/8/08

I really must take the time to thank you all for your prayers and your
support with Ammon. I also truly appreciated all of you took the time to
share your advice with me about the option of him have a
hemispherectomy. I have spent a great deal of time reading the advice
and reviewing the procedure and talking with our doctors. We have a
consultation scheduled with a second neurologist on 1/8/08 to learn if
he agrees with the option of the hemispherectomy.

The doctors that see him believe that it is very likely that his right
brain has already taken over all or most of the functioning for Ammon's
left brain already. Right now the left brain has the golfball sized
cyst, is underdeveloped and has a different electrical output than the
right brain. It may be that the only thing the left brain is doing for
him now is giving him the seizures. Each time he has a seizure, he risks
damaging the right brain. That is very scary too.

There would be risks with the surgery. He will likely lose fine motor
ability and strength in his right hand and risks losing sight in one
eye. His mood and language may also be permanently affected. But, he has
such little language now...do we risk losing it all?

Not having the surgery also has risks. His mood is changed by the
medications now. This current one makes him very aggressive, like the
first medication did. The continuing seizures can damage his right
brain. He spends nearly half of his life now either having a seizure of
sleeping one off. That is half of his time to be learning. He just gets
further and further behind.

So be thinking of us as we continue to research and consult with medical
professionals and other parents! One of our CHI families got me
immediately in touch with her nephew's mother who has had to make the
same decision for her son. Their results with surgery were amazing. He
has had no more seizures since the surgery 7 years ago.

So that is where we are. You know what I'll be hoping for Christmas,
health for my boy.

Ammon's medications not working

Ammon doesn't have a specific injury site in his brain to causes his seizures. Some people have those and once surgically removed the seizures stop. Ammon appears to have an overall under development of his left brain hemisphere. When his brain developed, something happened to the left side and this something likely also caused the golf ball sized cyst that sits at the bottom of it, just above his left eye. This has also resulted in different electrical outputs of the two hemispheres.

At our last consultation with the neurologist he suggested that we consider having his left hemisphere completely removed. I replied that he must be joking and the doctor said, "No, I'm serious. Children seem to do very well after these surgeries as the brain is plastic and the right side will take over many of the duties the left brain has now." I'm sorry, but I'm just not ready to take this step. How do you make the decision whether to remove half of your child's brain?

So, I would much rather have his own body figure it out through a medical miracle than having to decide to remove his brain. Please pray that his brain can mend itself without removing it. We've also been looking into seizure dogs. Somehow they can sense the electrical change in a person's brain before a seizure starts and get the child down on the ground before it starts so they don't fall. Sometimes this seems to stop the child from going into the seizure too. Right now Ammon needs to always be with someone. He sleeps in a toddler bed next to mine. Last night he had the seizure while he was in the hot tub with Makayla and the younger children. Makayla held him and Lan did her duty and ran out and got me. He always needs someone on watch. Good thing we have so many children who are wonderful about taking turns watching him. If he were in a family with no other siblings, I think it would send the mother to insanity.

Happy 1st Adoption Birthday Ammon!

A year ago tonight, Daddy, Lan and Mommy ate dinner at the rotating restaurant of the Holiday Inn in Hefei, Anhui province. We looked out over the twinkling lights below and imagined what the next 24 hours would bring. We knew the a whole lifetime would change before we were back to eat dinner again. We were going to meet our Ammon the next morning at 9 am at the Civil Affairs building.

On this Sunday Eve of this first adoption anniversary I look back on that Sunday Eve of Adoption Day. Had we known then what we know now, would have moved forward? Would we choose to do it again? Back that night we officially knew that Ammon had seizures and had learned unofficially that Ammon was a little behind in his language. When nobody had requested to review "Gregory" Group 12 and 13's file, and it was due back to the CCAA, our family decided that we would be his family. We had to fight CIS to get approval to bring him home. During the wait we learned that his SWI had no water, little food, no refridgerator, no washer, no safe cribs, no medicine and were able to immobilize the adoption community to dig a well and together literally save children's lives. Then our TA didn't come with the rest of our group and we watched them leave without us. It was a struggle at every step to get him home. How wise God was to make us fight....or we might have turned tail and run. I guess we had to prove that we were committed to this little boy.

At Adoption Day we did not know that he only had 10 words in his vocabulary and only five were recognizable by the Chinese. His favorite word was Da Shi Ya! Basically that meant, "watch out because I'm about to fight". He was absolutely out of control. He was hysterically panicked at being in any closed room, hotel and elevator included. He wouldn't go to bed. He ran from table to table in the restaurants grabbing food off other's plates. He could not stay still...remember how all his pictures have him a "blur" as he was always on the move. He absolutely would tolerate no restraints like a seatbelt. We didn't ever for a moment consider not bringing him home but from the very beginning we had no idea how on earth we would get him on a plane and all survive the flight.

We didn't know then that when we were to arrive in Guangzhou later that week that our guide Connie, who has helped hundreds of children newly adopted by their families, would crown him "the naughtiest boy she had ever seen join a family".

This was before we even knew about the arachnoid cyst on his left cranial fossa. Or that he would have serious blood issues that would require multi-weekly monitoring, that he would be a full two years developmentally below his chronological age, that he would still not be potty trained, that he would still have such little language, that he would have full blown temper tantrums with his first line of defense being head butting whomever tried to help hold him, that he would have so many quirky behaviors that put him on the austistic spectrum, that he would just now be learning how to play with "friends", that we would still be seeing seizures multiple times a week that we still haven't been able to control. That we would be on his third medicine and still no resolution.

Would we do it again? Would we have made a different choice knowing what we know now?

I hope we would have made the same choice. Since we didn't have that choice to make I cannot say for sure what we would have done. But then we wouldn't have known the infectious smile that brings people to love and want to protect him. We wouldn't have known the compassion and experience he was blessed our family with. The other day my high schooler had a peer fall into a seizure. While the class and teacher were frozen with fear she took over and confidently stood watch until he stopped seizing. My children reach out more to the "odd" the children who dance to a completely different song than the rest of the world hears. Ammon has touch us to see joy in the every day. A set of paper clips or clay dough can bring squeals of delight. He reminds us that humans are marvelous beings and that every little achievement should be cheered and savored. He has taught us to laugh....to appreciate the miracle of life and the worth of EVERY soul. He has taught us to love. Not one person gets to enter or depart his presence without a big kiss and hug.

It is with great pride that we share that our son Ammon who will 5 years old in February, is starting to understand language. Not English in specific but language in general. He is now understanding that language has power, that with language he can control his world. He has always been good about imitating language we model, but in just the past few weeks he has started showing spontaneous speech! Here are some examples of what we now hear from him, "I hungry, Yum, Here LanLan, beepbeeps (cars), help, excuse me, thank you, LanLan hit me, mine, stop, bless you, say prayers, ride bike, helmet, where's my shoes?". He was able to make a full sentence when baby Haydin was hear and tried to get into his precious cars. He took his car basket and said, "Mama, Help! Beepbeep up!" as he pointed to the top of the dresser!! And last night I said to LanLan, "I love you!" and he looked at me and said, "No, I love you". He was trying to tell me that I forgot to tell him that I love him too. He know can call of us by our names. That was huge! Every big person was "Ma" but now I have become Mommy. I am the only Mommy. And on his sweet sister Makayla's 19th birthday on Halloween, he called her by her name for the very time. How many other 4 year old can give a gift to their big sister than brings her to tears?

We still fight the seizure demon. He still has them multiple times a week, sometimes multiple times a day. The other day we were out hanging Christmas lights and he was playing in the driveway only 10 feet from us. He went into a seizure and we didn't notice. We didn't know. The pain it brings my heart to look and see him on the ground, alone, fighting the demon in quiet isolation stabs my heart like nothing else. It makes me, his father, all his siblings, his bus aides, and his teachers all extremely protective of him. He had his school picture taken and was so very handsome!! Just 15 minutes later at the snack table he feel into a seizure and I went to the school to bring him home. His little friends were so concerned. They rounded up his backpack and patted his hand. Ammon is teaching them too. He had a seizure in the bath for the first time. He fell forward and even though my husband was right there sitting on the toilet, Ammon swallowed some water. Will we be watching him bathe when he is 30?

I've put new pictures on the blog. Every Adoption Birthday we put the clothes are children came to us back on so we can see how much they have grown. Ammon has grown so much that we can't even get the straps over his shoulders! I've included some pictures of 1 year ago and then of tonight and his school picture. I have to say that his had sewn, multiply patched and darned padded pants and jacket should be included in a cultural museum. They certainly speak volumes of the life that was his while he wore those clothes.

http://ammonsadventures.blogspot.com/

Sometimes I worry myself thinking of all the things he can't do. What it will like for him if he has to live with us his whole life? Then I have to step back and think...well, he loves to help me cook. I'll teach him to cook and he can cook for me when I'm old. That will be a good trade off! But truly, what I want most for my children is that they feel good about themselves, that they know how to give and receive love, and that they are happy. Well, Ammon has this mastered. What more could I dream for?

And we aren't seizure free...

I'm just tes

ONE WEEK SEIZURE FREE!!

One week and Ammon has been seizure free! (Knock on wood everyone.) Up to a week ago we were seeing seizures almost daily and sometimes multiple times a day. Since we increased the medicine dosage and waited a week to see results we are seeing results. We are really hopeful!

Another positive is that Ammon has started attaching to his Mama. It used to be that if you had a vehicle and a smile, Ammon would happily go anywhere with you. Now he always wants to know that Mom is close and even cried going to the babysitter. He likes mom AND dad to be together and go in the car together. Its been 10 months and he's finally getting anxious if we aren't around. You can see his great big grin when the bus pulled up and he could see his house. He gets more and more excited each day when the bus pulls up to the house. The pictures are on his blog at http://ammonsadventures.blogspot.com/

You can also see the pumpkin person that our kids think is the funniest thing they saw on our way to look at the fall leaves. It will "crack" you up.

More seizures...

We really like our pediatric neurologist at Primary Children's Hospital. He adopted two children from Haiti last year. He is really kind to and patient with Ammon. He kept commenting that Ammon isn't the same boy we brought him in January after his adoption. He is right. Ammon cooperated with the to vital checks and didn't even try to dart out of the room and run down the hallway one time! That is because mom made sure to bring a backpack full of his current favorite toys...tape measure, and golf tees for him to line up on the floor in the opposite direction a golfer would do. Ammon has the point sticking to the air. HE LOVES THESE!

Ammon is almost back to 40 lbs after going down to 32 lbs from 40 lbs in May/June when his blood numbers were so out of whack. We were pleased about that. He is 2 inches taller.

Ammon is on Trileptal and they moved him up to 300mg twice a day. If this doesn't bring improvements after a week, he will begin a new medication. But, poor kid now has upwards of 7 seizures a week when before we were seeing one every month. At least these multiple seizures don't last as long as the once a monthers did. He had one in the middle of the nursery class at church last week. I am one of the teachers there so I saw him go down. The other teachers were very anxious. The children were frightened too. I don't want Ammon to be scary to the other children and I think we find scary what we don't understand so I explained to them what was happening and that Ammon's brain was getting stuck and that he would be okay but a stuck brain can make your arms and legs do strange things. Everyone watched closely and when it was over one of the 3 years olds put her hand to her chest, breathed a sigh of relief and said, "Phew, he's alive!" Now the next time this should happen others will know how to handle it. And the children will see he isn't a monster; isn't a weirdo. Its just what happens to him sometime and then he is Ammon again, a tired Ammon, but still Ammon.

He had one on Early Intervention bus and the bus driver and aid were both crying by the time they got to my house. It is unnerving and no matter how many times I see it myself it makes me anxious but if dealing with seizures means we get to be Ammon's parents we are happy to deal with them. They really are manageable. And nature blessed Ammon with an immediately endearing smile so people want to love him and help him.

When Ammon does have a siezure his eyes always open. They stare at you with the imploring look that begs, "Help me. Help me." Of course he can't see us but we can see those eyes and they make us feel overwhelmingly protective of him. I think that is nature's way too. Sometimes just his right side will convulse and sometimes just his left side and sometimes his whole body. But those eyes are always fixed, always calling for help.

No sooner has we started to get on the freeway to drive home that I hear a squeal from Lan in the back seat next to Ammon, "Mom!!! Ammon's having a seizure!" I quickly pulled off the road and put my arms around him while he sat strapped in his car seat, bubbles frothing from his mouth. Then it was over and he slept the 3 hours to home.

Thank all of you who continue to pray for him and think of him. We appreciate that more than you will ever know. We still need help to get him on the right meds so these are controlled a little bit more.

Well, I sit trying to figure out how I feel about what I'll write concerning Ammon's neurological evaluation at Primary Children's Hospital on Friday. Maybe putting it in writing we help me process it too.

The good news is that there will be no need to have neurosurgery to remove the cyst at this time.

The bad news is that there will be no need to have neurosurgery to remove the cyst at this time.

I was able to see the cyst in the views from the CT and MRI scans and it is huge in comparison to the other parts of his body in the scan. But, it does not appear to be growing and they will continue to monitor it but the likelihood is that his brain has learned, and is learning, to grow around it and compensate for it being there. If they did do the surgery to drain it they could go up his nose as it sits at the bottom of his brain, just under his left eye. They would have to put in a shunt as it will fill up again after being drained.

But, the risk is not worth the result...which is pretty much that removing it won't stop his seizures. It won't improve his language. It won't improve his balance and his sense of himself in space and motion. Ammon has global problems with the left hemisphere of his brain. The electrical impulses are not normal in his left lobe. His language center, which is in the left hemisphere in the brain is compromised. His seizures appear to be occurring in the left hemisphere too. It is likely that in the first trimester of his mother's pregnancy when his brain was forming something interrupted or influenced the formation. It could have been toxins, some fluke of development, they don't know. But it caused his left lobe not to form the way it should. It caused the cyst to develop. It caused the injuries to his brain.

His brain is not deteriorating. His brain will not get worse than it is now. It will only get better. But while he will make strides in his development, it is not predicted that he will ever be "normal" in terms of language, particularly expressive language. He will struggle with this his entire life.

In the past he would likely be labeled brain damaged. Today we call him brain different. I like brain different much better. No matter how optimistic you are as a parent, to hear your child has a significant brain difference is still painful. We need some time to grieve this news and then we can move forward. As parents, we have heard this before about another of our children. We were told that there was a slim chance this child could grow up to be able to live in a group home setting but that likely this child would never be independent. This child is legally considered mentally retarded (I hate that word but that is the definition by the law). Nine years and countless hours of special education later, this child scored a 23 on the ACT this spring and no doubt will be able to attend university as is the plan and live an independent life.

So, we continue to hold that same hope for our Ammon. We will immerse him in a language rich environment and continue with special education and love the stuffin's right out of him. But today we still are crying for him, for the extra difficulties he will face, for dreams that may never be reached. However we are confident that he will continue to meet life with his bright smile and determination and that makes us smile too.

We will be moving towards a picture based communication strategy for him. If any of you have experience with that we sure would love to hear how that is working for you. Ammon's visual memory is very good and we want him to have the easiest time in letting us know his wants and needs.

His blood work is looking much more normal. He is now on tryleptol in addition to his valproic acid for seizures. We will increase the tryleptol and decrease valproic acid until in about 4 weeks he is only on the tryleptol.

Thank you all for thinking of him and caring about him. He will continue to need this village as he grows but he will be fine. We will be fine. His life will be good.

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"!