Loving Levi

Updates at bottom of page!

the beginning: 

From the second i found out i was pregnant with my third child, i was elated and a little scared too. (three kids was never in my plans.) i loved this baby so much, i didn't realize, until that point, that i felt whole. my heart was full as it could get and i was a proud momma. the story of levi is incredible, from the moment i knew he was a little bean growing inside of me, i knew he was special. i didn't know exactly what that meant until the day before his first birthday in 2009. levi had met all his milestones, a happy baby boy full of laughs, love and kisses. and boy oh boy the sweetest baby cheeks and the longest eyelashes. i didn't suspect anything was wrong until he was eight months old and not crawling on all fours. he was still "army" crawling. concerned, his pediatrician referred him to a neurologist where they did all sorts of blood work. july 29th 2009, i got the result of the blood work, a letter in the mail and a phone call-nearly minutes apart. levi had a rare genetic disorder and he was "some where" on the zellweger spectrum. i had no idea what that meant, what the disorder was or what it meant for levi's future. (link to disorder description: http://ghr.nlm.nih.gov/condition/zellweger-spectrum) i started therapies for him right away. and for three years, we had therapy at least three times a week. he was surpassing all the expectations the dr's set ahead for him. he was not deaf, blind and on a feeding tube by 18 months of age. he did walk, he did run, in fact, he played sports! he could eat a whole steak. he could spot a spec of an airplane in the sky. i was certain that his diagnosis was wrong. 

loving levi: 

levi progressed and by his birthday this year, july 2013, he was very much a normal five year old boy, despite more than average falls due to low muscle tone. he had a sense of humor and wit about him that could make anyone laugh plus he was charming....oh so charming and way too smart (and stubborn) for his age. he went to preschool, he played sports with his brothers, went swimming and hiking, he sang silly songs and loved being the center of attention, which he always was. this kid absolutely loves life. he is always happy. his favorite things in the world are his family, his kitten, monster jam and penguins. 

 the change: 

christmas day was the last time i saw my little boy walk alone and talk 100% audibly. he was perfectly levi that night. as usual for blended and separated families, levi was going to spend time with his dad for a few days during christmas break. i remember holding his hand and telling him goodbye as he reached for me to hang on a little longer. he told me he loved me and he loved me more than that. (a game we've always played). little did i know, in a sense, i was saying goodbye to the way levi was and had been. just four days later, i brought levi home and saw how different he was. i was in complete shock and worried sick. this was a completely different kid and something was seriously wrong. he wasn't walking, his words weren't clear, he was crawling around with his head down, he started drooling excessively and wasn't eating or swallowing normally. 

 tests, results and heartbreak:

 my husband and i took levi to the er at riley children's hospital where we waited for nine long hours and fought to be admitted to have tests done. during the six days we were there they ran a multitude of tests including a 3 hour long mri, ultrasound, genetic testing, blood work, feeding/swallow study and a sleep study was scheduled for the following week. the mri told us nearly everything we feared the most. the disorder was taking over quickly. the white matter near his brain stem was degenerating. it is now lead doctors to believe that levi has x-linked adrenoleukodystrophy (still apart of the zellweger spectrum) but genetic testing hasn't returned to confirm. the mri also showed that levi had only one working kidney (which has caused no problems and it is healthy and working well, thank god!) there isn't any treatment or cure for this disorder. we have looked into research hospitals for answers but the process is slow and it will be costly. this occurrence is said to be the decline in levi's health and dr's estimated the disorder would take levi in only two short years but for now, this was levi's new normal. this is absolutely the hardest thing we as a family have ever had to face. 

Life at home:

 through all of the testing, all of the changes and challenges, levi smiles and laughs all the time. he never complains, never asks what is wrong, if he sees anyone upset, he kisses them. his strength and courage is beyond measure and he is my hero. we have four kids at home: hadley, 14; preston, 9; sam, 7; and levi, 5. my husband travels a lot for work. so, how do we make this work? levi needs 24/7 care. i only work a few hours a week at a restaurant in our small town (and who do i trust to care for levi while i'm working?). our new normal consists of carrying levi to and from the bathroom, trying to decipher words, keeping him active,three different therapy sessions in a town 30 minutes away, the older kids taking on more household chores, finding rides to and from school (the fuel line in my car busted in the hospital parking garage on the day of levi's discharge. never ask if there's anything else that could go wrong because apparently there is!) and figuring out how to keep the bills current. 

 how to help: 

our immediate needs are financial support to go towards bills (our first bill from riley is $13,000, insurance only covers so much), medical needs, prescriptions and a reliable van for levi and his equipment and for any future equipment. any money donated or raised will go to those expenses. but what we need most of all is prayers. please put levi's name on your prayer chains at church, lift his name in prayer for healing. 

 matthew 18:20  

"for where two or three gather in my name, there am i with them."


Update September 24, 2014:

By June 2014 Levi was no longer able to get enough nutrition by mouth. It was a battle to get him to eat more than 600 calories a day. He would become exhausted just trying to eat one small meal. He weighed a scary 31lbs. We had an emergency G-tube placed and as of today he weighs 36lbs! He is doing very well with his feedings. We are feeding him five times a day.
Levi has lost almost all strength to sit upright or alone. He can only sit assisted or in a special chair. His upper body is growing weaker and it's a real challenge for him to hold his head upright. We are being set up with a wheelchair fitting soon.
His last appointment at Riley was very heartbreaking. We are facing the reality of what is to come. We have to consider if we want to chose DNR when his heart stops and a whole bunch of stuff that comes with making end of life decisions. I struggle with that fact every moment. It's the worst thing to ever have to think about. I cannot escape the thoughts, the reality, the horrible choices I will have to make. But one thing is for sure, my family  would never ever be able to stand tall and strong without the help of our friends and family but most importantly, Levi's sweet smile.
As always, we ask for prayers and positive thoughts before anything else but if you have anything (I'm serious, ANYthing) to donate, that's a big help too. The medication and bills on one income is a bit overwhelming. Together we are a strong unit, with the help of others, we are even stronger. Please share Levi's story. He is the most amazing person and his battle against this disorder is tough. No doubt God is here with us and with Levi on his mission. Thank you to everyone that has helped us, all the penguins, monster trucks, cards, messages, artwork, donations, clothes, a good laugh, a break, hugs, making wishes come true at the zoo, all of it....thank you. Thank you. Thank you.