Make A Child Smile

Mikey's Story
written by mom Kathi

Michael, or as we call him, "Mikey", was born April 29, 2004 via planned c-section. Although he was breech, he was apparently healthy weighing 8 pounds and measuring 20 inches long. He came home from the hospital three days later.

In June of 2005, Mikey was diagnosed with Mitochondrial Disease. This is a degenerative disease where cells fail to generate the energy needed to sustain life and growth. As a result, children and adults who have this disease experience a vast array of symptoms.

Mikey may look and appear physically normal, but this disease can affect him hour by hour, day by day, week by week, or month by month. His symptoms include; global developmental delays, hypotonia (weak muscles/low tone), swallowing difficulties, silent aspiration, reflux, digestive and constipation issues, fatigue, sleep apnea, eczema, asthma, and laryngomalacia. He also has growth hormone deficiency. The disease limits his energy production and hinders his metabolism weakening his muscles and digestive system.

Our journey began when Mikey was 6 weeks old. We noticed he wasn’t gaining weight, sleeping all the time, and taking a long time to finish his bottle. He would fall asleep after taking an ounce of formula. He seemed to be uncomfortable and made loud noises while feeding and sleeping. We had to set a timer to know when it was time for his next feeding because he never cried for a bottle. We were sent to a Gastroenterologist who initially had us increase his calorie intake. To make things worse Mikey was severely constipated. There were several times he had to be disimpacted. We also went to see a neurologist because Mikey seemed very floppy. When you picked him up he was like a rag doll. He didn’t sit up on his own until he was 10 months old. Every week we were at the doctor’s office for weight checks or something else going on. He was tested for Cystic Fibrosis, Hirsprungs Disease, an Immune Deficiency, and too many other things to keep track of. He has had his blood drawn so much that we stopped counting. Some of the tests he had done included MRIs, ultrasounds, x-rays, EKG’s, biopsies, and 3 surgeries that required anesthesia and hospital admissions. We were dealing with so many health issues, and with few answers doctors started referring to Mikey as the "Mystery Boy".

At 9 months, Mikey was first diagnosed with Laryngomalacia. The test showed he was aspirating and having a hard time swallowing thin liquids, so the plan was to thicken his formula. Unfortunately he still wasn‘t doing well. We heard many good things about The Children’s Hospital of Philadelphia (CHOP), and decided to take Mikey there. In February of 2005 the doctors placed a NG tube in Mikey's nose because of his aspiration. Due to a life threatening incident where he inhaled the tube and turned blue, we decided it would be best for Mikey to get a G-tube placed in his stomach, and also have a muscle biopsy to determine if he could have some type of Mitochondrial Disease. He was admitted back to CHOP in April 2005 for Failure To Thrive because he was only weighing 12lbs. We were thankful to be home for his first birthday.

People who see Mikey have difficulty realizing that there is anything wrong with him. While he does look and act like a “normal” child, he still has a lot of issues. It is only through the regiment of his treatment to keep him doing as well as he is. Mikey takes a total of 15 medicines each day (not all at once). He also gets growth hormone injections every night. He receives Early Intervention services everyday. He is significantly delayed in his speech, he understands what we say. Mikey wears orthotics. He began walking without assistance at 21 months. When he is having one of his good days he is always on the go, but he requires constant care because he tends to fall and injure himself due to his body awareness. He wears a helmet to prevent visits to the emergency room. He has had stitches four times within six months. We are working with a Neurologist to determine if he suffers from small seizures.

With the help of his Feeding Therapist, we modify food or feeding position. We have to pace his feedings allowing him to suck, swallow, and breathe. The therapist completes a series of exercises to be ensure his oral mechanisms gets stronger and he does not become orally defensive which is a concern for children who do not eat by mouth. She also observes signs of aspiration which can put Mikey's health at risk. It is so sad when he is reaching for our drinks and he cannot have it because they are too thin for him to handle. We are very fortunate that Mikey is able to eat, but for some reason he can only digest and absorb small quantities of food which is why he requires his primary nutrition his G-tube. He is fed through his G-tube two times a day and continuously at night. Mikey has been on 5 different formulas. We are watching his milk intake due to his eczema and constipation issues and have seen some improvements.

After a year and a half of continued treatment, he has come from being in the 5th percentile to being in the 40th percentile. He has gained a total of 15 pounds. However Mikey’s health issues still impair his ability to a do lot of things. He will continue to see doctors and take medicine throughout his life in order for him to keep improving. He has been through so much at a very young age. He works hard with all of his therapists and has been doing much better going to the doctors and taking his medicines. Just recently he had his tonsils/adenoids removed to see if it can help with his sleep apnea because he had difficulty wearing the CPAP mask. At the same time of this procedure he had his ear tubes replaced, another muscle biopsy to determine the complex of his disorder, a colonoscopy and an endoscopy. He was admitted to the PICU for precautions. We are scheduled for another swallow test in March of 2007. He will also have a colmic manometry. We are looking forward to Mikey starting the Special Education Preschool Program at the elementary school in our town. He’s considered to have a multi-level diagnosis because he has lots of medical problems and needs. All his developmental issues are just a wait and see kind of thing.

Everyday Mikey faces new challenges with incredible dignity. He is a delightful child with a unique personality. He makes us smile each day. Most of the times he is extremely happy and has no trouble showing it. He plays like any other child but tends to get tired quicker. He is literally like a "light switch". He could have tons of energy at one moment, and within a few seconds he is sound asleep. There are still many things we don't yet understand about Mikey. Most of the time we take it day by day and focus on what is happening right now because he tends to get sick a lot and we don’t really know what is causing him to be sick. We are very thankful that Mikey can be treated at home in New Jersey with his mom, dad, big sister, 2 dogs, and cat. He has loving grandparents, 2 great-grandmothers, aunts, uncles, and 5 cousins who just adore him. We have been very satisfied with Mikey’s overall improvements and know he will do well because he is truly a fighter. It makes us happy that we were chosen to be parents of this special child. We enjoy every minute we can because life can change in an instant.