The Madelyn

On December 1, 2012 Maddy was hospitalized for failure to thrive with the cause being unknown. At this time, she was three months old and weighed 8 pounds. Maddy also had some muscle tone issues that we were concerned with. After countless rounds of blood work, a MRI, EEG, EKG, heart echo, eye exam, and a hearing exam, she was diagnosed with Bilateral Generalized Polymicrogyria (PMG).

PMG is a rare neurological disorder that occurs when there are too many small folds in the brain. Every child that is diagnosed with PMG is different in terms of severity and complications.These complications depend on where the PMG is located in the brain and how much of the brain is affected. In Maddy’s case, her brain is 100% affected, all over her brain (Generalized), and is on both sides of her brain (Bilateral).

Maddy has failure to thrive and is 100% G Tube fed due to this. She has hypotonia and hypertonia in her muscles, has CMV, microcephaly, is developmentally delayed, has an extremely floppy airway, and has developed seizures.

Maddy’s doctors predict she will never be able to walk, talk, and her future prognosis is unknown. She attends OT, PT, and speech therapy all twice a week. We are looking into aquatic therapy and feeding therapy for her as well. We are certain that with all her hard work in therapy, she will continue to fight hard and surprise us everyday! 🙂

Her limbs have high muscle tone and her trunk has low tone. This makes it very difficult to hold her head up and move her legs and arms…although she CAN do all of those things.

Most all of Maddy’s care is done at Children’s Mercy Hospital in Kansas City, MO. She is followed by a team of 12 specialist there.

Everyday is a new adventure for us. Our little family of six is extremely blessed and although life has thrown us a hurdle, we look forward to conquering it head on together. One thing is for sure, Maddy choose us for a reason and I am bound and determined to never let her down!

backto top