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Lucas’s Story

Welcome! We've created this website to keep friends and family updated about Lucas.

Visit often to read the latest journal entries, visit the photo gallery, and write us a note in our guestbook.

Visit us also at: http://thealdrichjourney.blogspot.com/

Lucas was born on October 28th, 2007.  For the first two months of life he progressed like any other normal child.  After that, we noticed some peculiar things about Lucas.  He would cry constantly and arch his back and neck in unusual ways for a baby.  At first we chalked it up to colic, but we knew something else was wrong.  He had a series of tests and finally we decided to do an MRI to rule out anything neurologic.  Much to our surprise we found that Lucas has a rare neurologic condition originally classified as polymicrogyria, now more specifically known as a diffuse cobblestone malformation, but for all intents and purposes we call it lissencephaly.  Basically during development, many of his brain cells didn't migrate to the correct place.  We have since found out that all of his brain is significantly affected especially the frontal and parietal lobes.  He has severely impaired motor skills (can't sit, stand, walk or roll-over), he is non-verbal, and is fed by a g-tube.   He is at a high risk of having seizures and pneumonia in the future and he also is expected to have a shortened lifespan. 

Within a week of Lucas's diagnosis, he was admitted into the hospital for pneumonia.  He was in PICU for many days and finally after 8 long days he was able to come home.  This however hasn't been his only stay in the hospital during his life.  At about a year he stopped taking his bottle and was in great danger of choking/aspirating.  We decided it was time to get a feeding tube.  He has also had his adenoids removed twice, his tonsils removed, ear tubes, a nissen fundoplication, his appendix removed, an intrathecal baclofen pump and a bilateral hip osteotomy. 

For the past two years, Lucas has attended a public preschool.  He has enjoyed riding the bus to school and playing with his friends.  He also goes to outpatient physical, occupational, and speech therapy  each week.  We are so excited to see Lucas gaining strides in all areas of his development.  He is getting so much stronger in physical therapy and he is also learning alternate ways to communicate his wants, needs, likes and dislikes to us.

In his short life, he's been on an airplane, boat, snowmobile, 4-wheeler, snow skis and he was given the trip of a lifetime to Disney World in Florida courtesy of Make-a-Wish.  We involve Lucas in every part of our life and make adaptations so that he can join us in all we do.  He thoroughly enjoys going with us in the car and being with people.  His smile is infectious and leaves a permanent impression with everyone he meets.

In spite of all his challenges, Lucas is such a wonderful and happy boy and is our precious little gift from God.  He teaches us new things every day and makes us better people.