Levi's Story

At Levi's 5 month appointment Shane and Megan had asked for a few referrals to specialists just so the family had people following Levi if they ever had a need for the future. Along with the referrals the family wanted, the doctor wanted an additional ultrasound on Levi's head to check for swelling or fluid in his brain. The results came back fine on 4/11/18. The next day, the family went to PMR (physical, medicine and rehabilitation doctor) for a consultation for a helmet for plageocephally (flat head).  At the appointment the doctor was concerned about something else and schedule an MRI Friday morning. From the MRI Levi was diagnosed with Left Coronal Craniosynostosis, which meant Levi’s left suture on his skull closed early. Inhibiting Levi’s brain from being able to grow. On 4/13/18, Levi was scheduled with 5 more doctor's appointments and surgery Wednesday (April 18th, 2018). On 4/17/18, the family had consultations with the neuro and cranio facial surgeons.  The original plan was to be able to complete an endoscopic procedure which is the lesser invasive surgery of the 2 possibilities.  After getting the results of the CT exam the surgeons decided the family would be unable to move forward with the original plan.  The CT exam showed that his right frontal suture is fully closed and his left is partially. This alone made it so he would not be a good candidate for the endoscopic procedure.  The family also found out that they believe there is pressure in his brain and it is shown in the back of his skull. When the family saw the CT pictures, it essentially looked like a honeycomb so the pressure is pushing against his skull creating several small holes in the back of his head.  Levi underwent a more invasive surgery on May 10th, 2018, a frontal orbital advancement procedure. He is expected to spend 5/7 days in the pediatric intensive care unit.   Both Megan and Shane recently moved to the Rochester area from Duluth to be closer to family. Megan and Shane feel fortunate to have moved to the Rochester area and had the opportunity to work with the specialists in the region. At this point Levi is on track for all his developmental milestones and if the pressure would have continued to build without it being discovered we could be looking at a different outcome. The family will be forever thankful for the PMR doctor who was able to see subtle signs. In addition to extreme medical costs, Megan has been off of work since April 16th, 2018 due to Levi's extensive medical needs. Please continue to check this page for the family's updates. Most importantly, Please keep this little man and unbelievable family in your thoughts and prayers.