Meet Michael
by Melody (Michael's mom)

Michael is a great little kid! He had an intraventricular brain hemorrhage after being born so prematurely, and that singular event has changed the course of our family's life.

Like dominoes being set off, the brain hemorrhage caused many side effects.

One of the results is that Michael has Hydrocephalus, or excess spinal fluid on the brain, and has to have an intraventricular shunt drain the fluid for him. The shunt is hardly noticeable when his hair is a little longer, but when he gets a buzz cut he has visible scars on the back of his head and a slightly noticeable bump on one side below the scar. Michael had to have 5 shunts placed and replaced within the first 18 months of life. Once he got an infection in the shunt and had to have an externalized shunt with a catheter bag attached to tubing leading to the shunt. The bag hung to the side of his bed. The good news is, it has been several years since his last shunt surgery.

Also because of the hemorrhage, he has cerebral palsy which affects the right side of his body. He can walk well and talk clearly, however, which is something that we thought he'd never do. He goes to physical therapy and occupational therapy to help him get strong and to use the right side as much as possible. The therapists are wonderful for helping me know just how to help Michael.

Oral aversion is something else Michael has suffered from. The doctors believe that because Michael had so many things put in his mouth as an infant (like the tubing for the ventilator to help him breath) he came to resist anything being put into his mouth. We tried feeding him for months with a bottle, but he failed to thrive. After talking it over with several doctors we decided to have a feeding tube placed directly in his stomach which we feed him through. He has done well with his feedings and growing, but we must rely on the clock more than on Michael saying he is hungry. In the past few months, though, he has started telling us more often when he is hungry. Within the past year he has even started chewing and swallowing food. Before that he'd taste food and spit it out when the flavor was gone. No one likes to share a popcorn bowl with Michael, but the dogs love him!

Michael has learning delays which have caused our family to learn to slow down a bit. It has been frustrating to have a child who stays in one phase for many months, but it has taught us a lot of patience. I have always said that Michael is our tortoise, but slow and steady will win the race!

This section is dedicated to our Greatest Miracle: Michael.