About Us

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DSCF1639-1-1.jpg picture by eamundsen

This is not a great shot of me, but since I’m usually the one taking the pictures it’s rare to have a picture of myself. I am Erin. Wife of John. Mother of Jahnna, Colby and Riley. I grew up some where in California on a small 4-H farm. I’ve raised all kinds of animals including my three children! I love to read, blog and learn all about the brain (you’ll understand why if you keep reading). I love warm weather and hate the snow but thanks to the Army I live in the cold 9 months out of the year it seems like. After everything our family has been through I’ve become an open book and an expert at research. I rely on my blogging friends and my real life friends for support and my sanity even though everyone tells me I never ask for help.  This blog is a record of our life and a way to raise awareness and though it’s small it’s what I can do for now.

John and I have an arranged marriage. I say that because my MIL and my BIL totally lied to John and said I thought he was cute and wanted him to ask me out. Then they lied to me and said John thought I was cute and wanted to ask me out. He asked me out and we never looked back. I guess it’s a good thing we really did end up liking each other.

John is a recruiter for the United States Army. He has had many jobs in the both the military and in civilian life. About 6 months after we were married he went back into the Army. He loves hunting, fishing, guns and tattoos. He’s been all over the world but I think I might have finally gotten him to settle down just a smidge. If you are ever in need of a story he can tell you lots of different ones about his life. They are fascinating. I have no doubt in my mind that the only reason he is alive after some of his adventures is because he was supposed to be Colby’s father. They are best buds and kindred spirits. Updated 06/11/11 May 16th 2011 our world was turned upside down once again when we found out John had a baseball sized brain tumor in his frontal lobe. He had it removed on May 18th and came through the surgery with flying colors. Two weeks later those awful words Brain Cancer became a part of our life. His tumor was a stage III Oligodendroglioma. The surgery was  a complete resection but we are still as of today waiting to find out if he will be going through chemo or radiation or if we are going to take the watch and see approach. The typical lifespan after diagnosis is any where from7 to 15 years. John swears he has at least another 20 in him and he’s just stubborn enough to live another 30 so if your into betting I’d put my money on him!

About a month after we were married I was pregnant with Jahnna. No newlywed first year. He got thrust into my insane world of hormones really quick! Jahnna was tumultuous from conception! I had morning sickness with the other two but nothing like with her. She is still our little whirlwind. She very smart and very compassionate. She is a great helper and she loves being a big sister. Most days. She also was recently diagnosed with ADHD, Oppositional Defiant Disorder and Bi-Polar. Which means life can be a bit of a challenge for her. I wouldn’t trade her for anything. She keeps me on my toes and shows me how much fun life can be.

Colby is our hero! When he was two he came down with e.Coli 0157 poisoning from a nearby mountain stream. Cattle had been grazing up-stream. We all got sick when we played in the water and then had a picnic. Colby was misdiagnosed with appendicitis. He was taken into surgery and given antibiotics. Not a great thing to do for e.Coli posioning. In fact it’s probably the worst thing they could have done for him. Two days later he was life flighted to Primary Children’s Medical Center in Salt Lake City Utah.

There he was diagnosed with Hemolytic Uremic Syndrome or HUS. He was placed on dialysis because his kidneys had failed. They thought they had him stabilized and moved him out of the Pediatric Intensive Care Unit and up to the regular floor. We were told he would be there for approximately two weeks.  They lied. He was having a stroke when they moved him upstairs. None of the doctors caught it. The next morning I was trying to give him a swab of water in his mouth and realized he was having a seizure. He was whisked off for an MRI where he coded and was brought back to life. He was placed on a ventilator and for lack of a better phrase was in a coma for the next three weeks.

We were told he might not live through the next 72 hours and there was nothing more they could do for him until he stopped hemorrhaging. His stroke is officially called  bilateral basal ganglia infarctions. Say that 5 times fast! He stayed in the PICU for another 4 1/2 weeks on dialysis that was cleaning his blood day and night to remove the toxins in his body. After leaving the PICU he was transferred to the Neuro Trauma Unit or the NTU for rehabilitation. Two months later we went home. Two days later we came back. Three days later we went home and two days later we went back. Three days later he came home for good.

Colby went from a happy healthy talking fully functioning little boy to one who had lost all his motor skills. He no longer talks, walks, or eats. He has had a baclofen pump put into his stomach and then removed 5 weeks later because it caused him to have spinal meningitis. He is fully dependant on every one around him. The catch is that he also understands everything around him. His disabilities are all physical and not mental. Imagine being trapped in a body that won’t do anything you want it to do. You say lift my right hand and maybe your left foot kicks. Or you think I’ll say “Mom I want a drink” What comes out is a high-pitched squeal or a grunt. The basal ganglia take all the messages in your brain and send them out to your body. Almost none of Colby’s messages go to the correct location. They misfire.

Yet through it all he remains happy. He is a tease and a flirt. He still loves skateboarding and fast cars. He loves to hide from anyone he can and scare them. All though it’s never scary since he can’t stop laughing hysterically while he’s hiding. He is a light in our lives that reminds us of what the human spirit is capable of. That every day there are people who defy the odds. That fight when they are told there is no hope. He is a fighter and an inspiration to all of us.

Riley is our third child. She is an angel. Just ask her. You can’t call her a girl or a daughter. Don’t call her a stinker. She is an angel. A very loud angel when things aren’t going her way. Riley was a surprise but we are so grateful for the surprise. She was born three months before Colby’s stroke. She has never known a life without a brother with disabilities. She doesn’t see anything different about him. Riley loves to share with Colby, Jahnna not so much. I suppose that’s how it is with sisters. You can’t stand each other growing up and become best friends once you figure things out when you are older. Riley loves to learn. She loves monkeys and dancing. She is a performer. She is a hugger and a lover. Our lives wouldn’t be complete without her.

{ 17 comments… read them below or add one }

1 Jody from Mommy Moment March 23, 2010 at 10:06 pm

Great “about me” section!
I love reading the “about me” pages!

Jody

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2 Toki May 13, 2010 at 10:24 am

Great “about me” section!I love reading the “about me” pages!
+1

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3 Kristina August 17, 2010 at 11:00 am

Hello, I found your blog through another blog when I saw a button about Colby’s story. You and your family are an inspiration, and I can just tell that Colby is such a treasure. I had tears in my eyes reading this entire “About Me” and I immediately became a follower (through Google Connect and NetworkedBlogs) when I was finished. My heart, thoughts and prayers go out to your family.

Sincerely,

Kristina
http://www.kristinawyatt.com/missmommy

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4 Amundsenchaos August 17, 2010 at 12:54 pm

Thanks so much for stopping by and for following. I can\’t tell you how much I appreciate the thoughts and prayers! Every bit helps. I\’ve said from the beginning of this journey that if one person is touched or helped by Colby and our families story then it will have been worth it. Thank you for reminding me that it\’s worth it!

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5 Missy @ Wonder, Friend August 24, 2010 at 8:43 am

I’m visiting for the first time (via a button on The Crayon Wrangler) and almost didn’t leave a comment, because I’m speechless. Yours is an inspiring family! I really don’t have the words – just want to thank you for sharing your journey.

I saw that Colby will have surgery tomorrow. We are praying!!

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6 Amundsenchaos August 24, 2010 at 10:33 am

I\’m so glad you did leave a comment! Thanks for stopping by and for the prayers We really appreciate them!

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7 Andrea D. Jackson September 20, 2010 at 12:08 pm

We Love Colby!

Your family has been through a whirlwind of obstacles with Colby’s health, I would like to tell all of your children how special they are….To families who don’t even know them!!!! You guys are great!

I am a respite provider, a 26 yr old widowed mother and will tell you it is (my job) and children like Colby that give me the strength to keep a level head on the “happenings” in my life.

Your family is in my thoughts and prayers!

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8 Lori September 21, 2010 at 10:14 am

Hi Erin, I’m stopping by from Red’s BF Community. I saw that you just started K12. We have been enrolled in a K12 online school for 7 years now and loving it. Best wishes for a successful 2010-11 school year.

Your story above is just incredible. It sounds like you have one very special, very beautiful family that shares so much love and so much strength. Thank you for sharing your story.

I’m following you now so i can keep up with your posts.

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9 Viviene October 5, 2010 at 8:50 pm

lolz.. I was surprised with your line “We have an arranged marriage.” I was like… what? that was a funny way to put it =)

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10 Monica April 28, 2011 at 10:00 am

I don’t actually know how I stumbled onto your blog, but it feels like one of those moments I’ll never forget. I struggle with health challenges that, at times, have seemed profound, but in reading your story I am reminded that we don’t ask for the path we are placed on…rather, we are asked to navigate it. I am touched by how you have chosen to navigate your path.

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11 Amundsenchaos April 28, 2011 at 5:16 pm

Thank you so much Monica! I hope that your challenges clear up for you and if they don\’t I hope you have the strength and peace to get through them the best you can.

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12 KittyKerri May 31, 2011 at 9:33 am

I’ve been a fan of A Review for a while and until you started posting about your husband’s brain tumor never knew much about you. Somehow I missed seeing this family blog until today. I’m so glad I found it. For one it’s nice knowing who you are following and two you have such a powerful story. I will be keeping your family in my thoughts and prayers.

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13 Tamela June 21, 2011 at 9:49 am

Wow, what a informative and powerful about me section. Looks like you are also a Hero and the source that keeps your family strong.

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14 Liz June 27, 2011 at 11:32 pm

Question…How is Jahnna? How could you tell normal childhood tantrums and other childhood behaviors from the oppositional defiant disorder? I’m familiar with bi-polar from my Psychology classes in college, but how do children behave when they are manic?

Hope you are doing well.

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15 Amundsenchaos June 28, 2011 at 12:24 pm

It took about 2 years to get to that diagnosis. She has always been a tempormental child. When she was 2 she would tell me that her body felt out of control and that she couldn\’t stop moving it. Her tantrums used to last HOURS! Some kids get mad and a few can even yell for 20 to 30 minutes. She would throw kicking, screaming, hitting, biting, 3 to 4 hour long tantrums that you could do nothing to stop. You couldnt distract her with anything or bribe her she just had to let it out. It was miserable. I started thinking she had ADHD because she said she couldn\’t control her body but it never really felt right. She could control herself even at a young age around other people but she\’d get home and all the pent up frustration or anger would just unleash! I talked to her pediatrician about it after we returned home with Colby following his stroke. She suggested counseling. Jahnna was 5 by the time we were able to get into one. She would tell the counselor what the counselor wanted to hear. It was ridiculous. She\’s 5 years old leading this counselor on this incredible tale and she bought it hook line and sinker. Finally I videotaped her and brought it in to show her and she said \”Oh I don\’t think I can help you with this. She is out of control! Have thought about seeing a psychiatrist?\” So away we went. He put her on a couple different medications (not all at once) it seemed like nothing really helped. Finally we found one that seemed to help her focus and reduced the tantruming but then she was really depressed and cried over everything. She is incredibly in tune with herself and she couldn\’t figure out why she was crying. So he put her on an antidepressant and with in a week of being on that she went manic. She was up for 23 hours. Bouncing off the walls. Standing on her headboard and doing belly flops onto her bed at 2 in the morning. She was talking super fast, eating fast and you could just see the energy bouncing out of her! I called the psychiatrist and he said \”I thought she would do this. She\’s bi-polar and we need to get her on different mood stabilizers. Does she need to be hospitalized?\” I could not believe he wanted to admit my 6 year old to a psyc ward! Anyway she is fairly stable now but kids who are bi-polar cycle much faster. She has a manic week, then a semi normal week and then a low week. We are on a waiting list to head back to a child psychologist in our area because she really needs to learn to deal with both her brother, her dad (even though she doesn\’t really understand what cancer is yet) and her own emotions. I\’m really hoping that this counselor is better able to see through the facade she puts on and get to the root of things. It\’s exhausting being her mother from an emotional stand point. Her emotions are so much bigger than other kids. Everything is 10x\’s bigger, or sadder or happier even on medications. Anyway that could have been a blog post in and of itself! ;)

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16 Shellie Henry July 8, 2011 at 10:43 am

Love your life. I can’t even call it a story, because there is no story aspect to it. I’m amazed by your families way to stick it. Just wondering…are you LDS by chance? I am, and I just see this light around you guys. I’m not sure if it’s my “LDS-sensors” as I have heard it been called, or just your amazing determination to keep sane amidst the chaos! much love.

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17 Amundsenchaos July 8, 2011 at 10:48 am

Hi Shellie! Your sensors are spot on! We are all though my husband has not been active for years. He\’s working on getting his priesthood blessings restored and taking us to the temple sometime in the next year. Thanks for stopping by!

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