About

Jackson was born on October 1, 2011, which was also his due date. He came into this world via emergency c-section, weighing 5 lbs., 11 oz. The first few months were bliss.

Jackson missed some of his milestones at his four month checkup. About a month after, we took Jackson back to the pediatrician because we became more concerned with his delayed development. The pediatrician ordered physical therapy. A few weeks later, Jackson started having infantile spasms. He would contract and release his arms and legs for 15-40 minutes upon waking. This led to another doctor’s appointment, which led to an abnormal EEG, which led to an MRI. On April 11, 2011 (the toughest day of our lives), the doctors told us Jackson had lissencephaly. Blood work revealed he had Miller Dieker Syndrome, which is a type of lissencephaly (Yes, there’s more than one type. You’ve never even heard of lissencephaly let alone different types of lissencephaly). Our blood work revealed that his condition was a “random event.” The likelihood of this happening to us again is less than 1%.

If you woud like to learn more about lissencephaly, you can google it. The information is very depressing, which is why we don’t want to post it here. Jackson is Jackson. He’s going to develop at his own rate and we’re going to give him the best opportunities we can. We don’t want the literature putting limits on what we think he’ll be able to do.

Since his diagnosis, we’ve been to the neurogist, eye doctor, audiologist, developmental pediatrician, physical therapist, occupational therapist, pediatrician, etc. Basically, we’ve had a lot of appointments.

Jackson takes anti-seizure medicine. Due to his brain abnormality, he’ll always have epilepsy. He also takes acid reflux medicine because of his low muscle tone.

Jackson’s a great kid and the joy of our lives. He’s able to do wonderful things. He “talks” a lot!!! For example, he always lets us know when he wakes up in the middle of the night 🙂 He smiles, he holds his head up (most of the time) and he’s starting to bat at toys. He loves his mom and dad.

We have GREAT family support. Both of our families are extremely involved in Jackson’s life, which allows both of us to keep working. Jackson’s grandparents take him to most of his appointments, which fall during the workday. They’re terrific at taking him to therapy and relaying to us what he learned and what we’re supposed to work on with him at home. It takes a village.

We’re looking forward to sharing our story with you and hopefully providing some helpful information to those in similar situations. We also thought this blog would be a good way to keep our friends and family updated on Jackson’s progress and the goings-on of our families.

Santina and Josh

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2 responses to “About

  1. Just a note to let all of you know that you are in my thoughts and prayers. I am so grateful to Gina for letting me know about your situation/life.
    Peace, Sister Mary Jo

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