Ethan is doing Great!

I am so happy to share Ethan's progress since his neurosurgery 10-30-08. He is doing so well. We are thrilled with his progress. He has not had any seizures! We are weaning him off the phenobarb. He has been experiencing some withdrawl symptoms that make him irritable. He is almost completely off the phenobarb now and it has made a huge difference. He has made some remarkable changes in the last 2 months:

1. He has gained the ability to smell and taste. We now believe that he could not taste or smell before surgery. We did not know this, but he never asked for food or candy. I could take a sucker away from him without any protest. When we would tell him to smell something he had no idea what to do. Ever since the surgery he is smelling everything like crazy. He rushes over to smell an orange being peeled, he loves to smell all my lotions and cleaning supplies. When he finds some of my lotion he smells it and says "mama" with a smile. He now has a much greater interest in food. He asks me for candy all the time.

2. He has an increased attention span and seems to be thinking more clearly. He will sit while you read him a book (something he would never do before). He watches TV. He looks out the window in the car and points to things. Last time he rode in the Tahoe he actually asked to watch a movie. He can learn a skill by watching someone demonstrate it. It is truly amazing.

3. He is increasing his vocabulary. He has learned many new words and understands almost everything we say. He has just started putting 2 words together like: "my ball" and "hot mama" (my kids taught him to say that, they think it's hillarious).

4. His temperament is much more calm and sweet. He is more agreeable and obedient. He doesn't try to retaliate when he doesn't get his way. He used to be aggressive and hit or bite. He almost never does that anymore. He shows sympathy for others. That's new too!

5. He has regained some of his visual field. This is the most remarkable thing to us. Before the surgery Ethan never advanced his eyes right of center. He held his head in a position towards the right to maximize his visual field. Now he can definitely see to the right and holds his head straight forward. He doesn't have his full peripheral vision but it is hugely improved.

The only deficit that Ethan has is in the use of his right hand. It is definitely weaker and has less dexterity than before. We are working on getting therapy for his hand. We consider that deficit a small inconvienence when compared with what he has gained. We think this is the start of a great new life for Ethan. I just wanted to share the good news!

I hope I don't spoil the surprise. Erin made me this darling christmas card and I couldn't wait to show it off! All of you will most likely be getting one in the mail but here's a preview. Erin is a computer wiz. She has made me several awesome collages in the past.

Surgery Update!

We got home from Michigan yesterday. Thursday November 6, 2008. Exactly one week after Ethan's neuro-surgery. Everything went perfectly!

Heavenly Father has truely showered blessings upon us this week.

Our kids were so thrilled and relieved to see Ethan looking so great. I think they were all very trepedatious about how he would look and act. I'm so happy they had a great time while we were gone. I felt bad about missing Halloween but thanks to Val and Mark they had a blast.

Okay, I don't know how to pull up pictures on my blog in the order that I want them. I just had to upload pictures and describe what is happening in each one. So, if you want the whole story you have to start at the bottom when Ethan is on the airplane in blue sweats and read your way back up to the top.

This is the 7th day and we just couldn't take it anymore.

the boys are chillin' while I pack up the room.

He looks pretty cute in his hospital gown.

So they ended up removing all of his left hemisphere except for the frontal lobe. And they were able to leave most of the motor cortex. The doctors told us this was the best case scenerio because the frontal lobe is all higher intelligence, reason and logic. The motor cortex allows him to use his rightside.


It is amazing how meticulus the surgeon has to be. He told us about coaxing viens apart with special tiny tools and separating tissue layer by layer. We are so grateful to Dr. Sood for his masterful execution of this procedure. We can see why he's the best! Other Doctors would have done a totally hemispherectomy on Ethan, because they feel all this disecting is too risky. I have some pictures of the tissue they removed and it looks totally dead. It is all dense, black and shrivelled.


They believe Ethan has a 90% chance of being completely seizure free! We are hoping this is the start of a great new life for him.

Surgery Update!

It was hard for him to get comfy because he couldn't rest his head on the leftside and he was all hooked up to IV lines and drains.





Tami and Kevin were so sweet. They drove over to Detriot to see us in the hospital. It was a long drive from Holland Michigan where they live. They brought the 3 boys Kyler, Jordan and Caleb. Tami's boys made this darling build-a-bear dressed like a doctor. Ethan loves it! He totally knew what to do with the stethascope. He put it around his neck and put the other end on his chest. Tami also brought me a bunch of fashion magazines to help pass the time.

I finally got Ethan to sleep at 12:00am and then I fell asleep. Travis and I would trade off sleeping at the Ronald McDonald house for 4hrs. at a time. He would sleep 10:00pm-2:00am and then I would sleep from 3:00am-7:00am. We were pretty exhausted but we thought it was very important to be with him at all times. Mistakes are bound to happen when they are relaying information from Surgeon to Resident to PA to Nurse. Some friends we met at the hospital who's baby had the same procedure a week before Ethan. Told us that someone forgot to give her the anti-seizures meds for 24hrs. and she had 5 seizures. We closely monitored every single thing that was given to Ethan.

After the EVD fiasco things started to get better and better each day! I don't know if you can see it but Travis is a little teary eyed in this picture. It was just such a relief to see Ethan acting like himself and feeling better. We spent a lot of time counting our blessing and thanking Heavenly Father for them. Speaking of blessing thank you to all our families for the love, support, fasting, and prayers! We are so fortunate to have so many people who love us.

Here's a good view of the JP drain

No one likes a frowny face!

This is the day they took out the EVD. This was the worst part of the whole experience if you are easily grossed out you may want to skip this part.

The EVD is the drain that goes directly into the crainial cavity. I don't know why, but they let PA's (physicians assistant) remove the drain. If everything goes the way it is supposed to; you just gently pull the drain out. The surgeon has left to long sutures, they call purse strings. After the drain is out you just tie the strings tightly to close the hole and that's that. We saw them remove JP drain the day before and it was a sinch.

Well, everything did not go the way it is supposed to. The idiot PA started to pull the drain out and we realized it was tethered to the purse strings. So me and another PA were trying to hold Ethan down as she kept pulling it out and then pulling it back in as she pulled on the string.

We could see that the suture went right through the end of drain. She could not remove the drain without cutting the purse string. We told her she needed to cut the string but she misunderstood and cut off the drain. Leaving a little stub still in his head.

At this point Ethan's head is gushing spinal fluid from the little stub of hose she left inside. She tries holding her finger over it and says "What should I do?" The other PA says "You have to get that drain out." So she starts digging around with tweezers and she can't get a hold of it because she keeps grabbing his skin. Meanwhile he is still leaking CFS he's totally screaming and we are holding him down. She says to me "The reason he's losing so much fluid is because he's screaming and that makes more pressure in the brain. YOU THINK! I was so angry, and scared I started sweating like crazy and getting dizzy. I was about to pass-out. When she finally got the drain out she put her finger back over the hole. Then, because she had cut the purse strings she had to do two stiches to close the hole. That's 4 times of poking through his skin with NO anesthia. We just had to hold him down!

Afterwards I asked the PA, "how can you be absolutely sure you got all the drain out?" She said she was sure, but me and the other PA were not going to take her word for it. We decided to do an X-ray to make sure. They gave Ethan some morphine to knock him out after the traumatic event.

When we went down to do the X-ray Ethan looked up at me with the palest, sickest, look on his face and then vomited all over us. Poor little baby. I'm sure losing all that spinal fluid made him totally nauseaous. It also made him feel like crap for about 12 hrs.

This is him sleeping after the drain was out. Unfortunately Travis had gone back to the Ronald Mcdonald house to sleep so I was all bymyself. After Ethan fell asleep I just held him and cried and cried.

The sutures in the back are from the two drains that Ethan had. If you look at the earlier pictures you can see a red drain (called a Jackson Pratt drain) and a white drain (called an EVD). The JP drain was between the skin and the skull and it drained blood and fluid. It has a bulb on the end and it filled with fluid every 4-6hrs. I can't imangine how swollen his head would have been without that drain. The EVD went directly through the skull and into the crainial cavity. It's purpose was to drain cerebral/spinal fluid (CSF) so that there would not be too much pressure in the brain. The EVD could also give a pressure reading so they could monitor it. I can't believe what a refined process this has become.

Dr. Sood (The Neurosurgeon) told us that before they started using the JP drains, kids head's would swell up like a balloon. I've seen pictures of kids following brain surgery and their head is as big as a pumpkin and their eyes are swollen shut. Ethan had almost no swelling as you can see from the pictures.

The EVD serves to drain the bloody cerebral/spinal fluid so that the body can produce new, clean, CSF. Before they started using EVD's everyone would get a super high fever as the body tried to clean the CSF. Obviously super high fevers are very bad for seizure prone kids. Ethan never once had fever!

We feel so blessed that we were able to benefit from all this new medical technology. We think Ethan received the very best care available. I know that it was Heavenly Father who lead us to Dr. Sood and Dr. Chugani. We couldn't have asked for a better result.

Baby On Drugs!

They gave Ethan Morphine for the pain and he felt really gooooooooood! He was totally stoned that's why we eventually went to half doses.

Kissing Monkey

Here's Ethan hugging his favorite toy Monkey!

The night before we were discharged he pulled his IV out again and the nurse said they would have to put in another one. Trav and I thought this was crazy because we were leaving in the morning. But the nurse was insisting until finally Travis said, "I'm am refusing to allow anyone to put another IV in." The nurse was very nice and said okay I'll make a note of it in his chart.

Way to go Trav! Another time we told them we only wanted Ethan to have a 1/2 dose of morphine and the nurse said she couldn't do that because that's not the way it was written. We knew that she could because every other nurse had done it. Travis said go ahead and put the full dose on the pump and I'll stop it when it's half done. She finally agreed. Sometimes you need to be a little assertive when it comes to your sweet baby.

During the 8 days that Ethan was in the hospital he had 5 different IV sites. "Why so many?" you might ask. He kept pulling them out! When he was still in PICU I lifted up his blanket and saw a pool of blood at his ankle. He had kicked out his IV and he was bleeding everywhere.

In this picture he pulled out his arm IV and it was bleeding like a fountain all over us.

He started using his right hand when they put an IV in his left hand and taped it to a small board. This really made him angry! But in retrospectic it is lucky that they did. Having his left hand immoblized forced him to use his right. It was physical therapy and it worked like a charm! He just keeps getting better and better at using his right hand and we expect him to fully recover the use of it.

At first Ethan couldn't use his right hand (the sensory strip was gone). I think it felt numb to him because the first couple of days he kept biting it softly and pinching it as if he couldn't figure out what was going on. It was so cute! You could just see in his eyes that he was thinking what's going on with this arm.

As soon as Ethan woke up he smiled at us and pig snorted and we could see that he had NO facial paralysis. What a blessing! We think that he had some facial paralysis about a year ago. He had a pretty assymetrical smile, but then it got better. Now we think that his brain probably reorganized and the right side took over the function of the right side of his face (it is supposed to control the leftside. Each hemisphere controls the opposite side of the body). So when they removed the motor strip it didn't matter because it was already useless to him. The brain is sooooooo incredible.

The surgery lasted about 8hrs. But we didn't see him from 8:30am until 6:00pm. The surgeon was very thoughtful and he had someone call and give us updates every hour. Each time they called they told us that everything was going perfectly.

At one point Dr. Chugani (head of Pediatric Neurology) and Dr. Asano (epilepsy specialist) came to the waiting room and said they needed to speak with us privately. Of course this terrified us. It can never be good news when you need to go in a private room to talk. They told us that the motor and sensory strip that control Ethan's face and the sensory strip for his right arm needed to be removed. This would mean Ethan would have a facial droop/paralysis that could last several months. They said that without the sensory strip for his arm it would feel numb until his brain figures out that it is still a part of his body. We said yes, remove what ever you need to and we will deal with the consequences.Thursday October 30, 2008. This is in the PICU right after he came out of surgery.

5 minutes before the plane landed he fell asleep with his sucker in his mouth. By the way everyone was more than nice to us on the plane ride home.

The plane ride out to Michigan was the worst ever! Ethan was awake and out of control the whole 3.5 hrs. We tried everything to keep him quiet but it was torture. The flight attendant was getting annoyed and she said, "I bet this makes you guys not want any more kids." I said, "Too late! We have 3 more at home and they're angels." Then we told her we were going to Michigan for brain surgery, and that his anti-convulsant medication makes him aggressive. That shut her up quick and she was very accomadating the rest of the flight. Ethan finally fell asleep with 5 minutes left in the flight.

Family Pictures at Liberty Park

The Huge Group! There are 39, I think. Lucky Dad!

Ethan was saying "Cheese" all day.

I know blogs are just a forum for bragging about our adorable kids. So look what I have to brag about!

My Sweet boys! You can see Ethan is giggling. We were telling him, "Kiss mommy for a long long time." He kept kissing me quickly and we couldn't get the picture.

I am planning to use this picture for my christmas card so if you're on my list you'll be getting one. If your not on my list and you would like to be. Send me an email/comment with your address and I'll send you a christmas card. Also, If you have moved (Betsy) send me your new address.

Miriam organized a family picture day for all the Eskelsons. She wanted each family to choose a fall color for their family to wear. I had just purchased black and gold dresses for my girls from Costco so I said we will choose gold. I didn't even think about how hard it would be to find gold dress shirts for my boys.

Of course I couldn't find any toddler sized gold dress shirt. After 3.5 hrs. of torturous shopping, I had gone to every store in the Layton Hills and New Gate malls. I finally found gold shirts at Mervyn's size 4 and size 7. Ethan is not even 2 yet so I was planning to try and take in the size 4 shirt. Then Miriam told me this genius idea. She told me to buy shirts at DI and dye them gold. So I found two white dress shirts in their perfect size for $3.00 each. The dye cost $1.50. So, $7.50 later I had 2 perfect gold shirts. The Mervyn's shirts were $15.00 each. So this was a Big Savings!!!

Piano Recital

Hannah and Dave had their first piano recital, September 25, 2008

Hannah played, "The Second Star to the Right" from Peter Pan.

Dave Played "I Hope They Call Me on a Mission."

Hannah won the "Student of the Year" award.

Ethan couldn't resist playing his recital piece too.

They each played their piece perfectly. We were so proud of them. The best part was that the teacher, Amanda, only has 5 Students including our two so the whole recital lasted about 15 minutes.

Amanda gave out awards to each student. Hannah won the "Student of the Year." The prize included $20. We call that tuition reimbursement. Actually, I guess I'll start saying she is on a piano scholarship that sounds better!

Dave won the award for the most enthusiastic learner. Which he definately is. He loves piano and everything to do with music. He wants to learn to play the Indianna Jones theme song next. He's obsessed with the movies and wants to be Indianna Jones for Halloween.

Ethan absolutely loves music as well. He couldn't resist hopping up to play his recital piece. Every night we turn on Classical tunes from the Ipod for Ethan to fall asleep. The first song is "Claire De Lune" by Debussy. The other week we were at Trav's parents house for dinner and someone started playing that song on the piano. Ethan went running in and stopped dead is in his tracks. He listened, mesmerized, to the whole song.

What We Found Out in Michigan

Travis, Ethan and I, traveled to Michigan this week to meet with Dr. Chugani at the Children's Hospital of Michigan. We were participating in a study for children with Sturge Weber Syndrome. As part of the study Ethan underwent many tests including an MRI, Neuro-psych evaluation, EEG and PET scan. All of these tests serve to determine current brain function/damage.

When all the tests were complete, we met with Dr. Chugani (he is a pediatric neurologist and the foremost authority on Ethan's condition) He explained to us that the back and lower region of the left half of Ethan's brain are no longer functioning and should be removed. He also feels that brain surgery would surely enhance Ethan's current and future quality of life. This surgery known as a "lobecotmy" or "partial hemispherectomy" is very specialized particularly in children. Only 3 hospitals in the nation perform this surgery pediatrically. The children's hospital in Michigan performs the most on patients with Sturge Weber Syndrome. So, this is where we have decided to have Ethan's surgery.

If all goes as anticipated the Doctor told us we could expect Ethan to have a seizure-free life. Which would be AMAZING because at present Ethan has 8-10 seizures a month. It would also mean that Ethan could be weened off all the awful medications he has been taking for over a year.

We are very excited about the prospects of this surgery; well, as excited as one can be about cutting out a portion of your baby's brain. Travis has always felt that surgery could be the answer for Ethan. But, the idea always terrified me.

In the past two months I have been doing a ton of research on the procedure, doctors, and families who have already had the surgery. I stayed up for hours each night reading everything I could on the subject. I heard many encouraging stories, along with some horror stories. I knew that Ethan's window for this surgery was closing. The best results are achieved if it is done before the age of 2. It is done in older children and even adults but with less favorable results. The reason it is important to do early surgical intervention is because it gives the remaining portion of the brain the best chance to reorganize and assume the functions of the missing portion. Also because the nature of the disease is degenerative. If you don't stop the seizures and remove the dead portion, you run the risk of mental and physical decline.

Dr. Chugani thought that after surgery there was an excellent chance that Ethan could have a normal life with normal intelligence. I know this sounds incredible. How can someone be just fine when you remove a chunk of their brain? Apparently a child's brain is incredibly malleable and capable of compensating for a surgery like this.

I feel sure that my Heavenly Father has had a hand in this whole process. We have been so blessed in our lives. We have relied on our testimony that God knows what he is doing and he loves us with a perfect love. Our love for each other has made it possible to get through every difficult situation that we have had to face. I trust Heavenly Father, and apparently he trusts me to make the right decision for sweet Ethan.

We have also relied on the love, help and support of our families we are so fortunate to have all of you in our lives. I love you!

Biker Babes

Hannah, Dave and their cousins love riding motocycles. We have these two little Honda 50's. These bikes are the perfect size. As you can see they love to ride together. These are the same motorcycles that I learned to ride on. I love seeing my kids have the same FABULOUS childhood that I had.

Man vs. Wild

Well my little snake wrangler was at it again this weekend at Bearlake. Davey caught this snake. We told him that he could survive on snake meat if he ever got lost in the wilderness. Dave wanted to know what snake meat tastes like. I told him I thought it would taste like hotdogs. That sounded great to him.
Hailey was scared of the snake at first but then she smiled big for the camera of course. We tried to let Ethan hold the snake but he didn't even know it was alive. He just wanted to play in the water.