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 was medically retired from the Army in June of 2013. 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 motorcycles, 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 from 7 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! Updated 11/14/2013 John’s tumor came back sooner than expected in August of 2013. He had a seizure one morning and I knew it was back before we went for his MRI that afternoon. He had surgery to remove it September 4th and gave me a nice birthday present by coming home on the 6th. His surgeon laughed and said that he never looks like he just had brain surgery when he sends him home. As of today he has finished his 14th radiation treatment out of 30. He will get a month off of treatment and start chemotherapy on January 9th. This is a harder chemo than the Temador so we’ll have to wait and see how many rounds of chemo he makes it through before he has to stop. Radiation makes his tired and his hair fell out so he’s shaved his head.
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. Updated 11/14/2013 Riley decided she hadn’t had as much fun as every one else and she broke out in Petechiae in June of 2013. That’s a fun way of saying her platelets dropped way to low and her capillaries were bursting. She’s been having blood draws every couple of months to monitor it for now. Hopefully it was caused by a virus and clears up on it’s own soon.