The Monkey

Five years ago, The Monkey was given a devastating diagnosis. We were told she would not live to see her first birthday. She, obviously, had other plans. At six years old, she continues to improve daily. Most people aren't aware of everything she struggles with or where she has come from. It has been a long journey with her. One we are no where near through. Her disorder is a life long condition that we are unsure of the exact effects.

Monkey's main underlying condition is a protein metabolism disorder. Her doctors suspected Methylmalonic Acidemia, but a skin biopsy/genetic mapping confirmed that she does not have any known form of MMA. However, due to her symptoms such as extremely high levels of methylmalonic acid, her doctors are still operating under the assumption that she has a metabolic disorder involving protein metabolism. Associated symptoms include extreme hypotonia, periods of hypoglycemia, vomiting, respiratory distress, and lack of appetite. Monkey is 46 inches tall, and weighs around 30lbs. She eat approximately one meal per day, and a few bites of food randomly through out the day. We allow her to dictate her diet. She drinks milk, enjoys eggs, and loves fish, but can not handle sources of protein, such as red meat. Through my own observation and research, I have determined that Monkey must break down some protein sources better than others. The life long effects of this disorder are unknown, partially because no one has ever been able to exactly pinpoint what Monkey has.

Aside from the previously mentioned symptoms, Monkey also has a kidney malformation and a Velopharyngeal Insufficiency or VPI. The kidney malformation was found during routine testing for surgery, but has been symptomatic since. Monkey is monitored closely for signs of kidney failure through blood work and routine renal ultrasounds. VPIs are typically surgically corrected. However, Monkey is not a candidate for surgical correction due to her other health conditions, such as low tone. Instead, Monkey receives one hour of private speech therapy per week and one hour of therapy provided through her school.

On top of all of this, Monkey is profoundly deaf. Monkey was born with normal hearing. She cooed right on time. She babbled early. Then one day she stopped. When Monkey was eighteen months old, she was diagnosed as profoundly deaf. I was relieved. Perhaps a strange reaction to finding out your child is deaf, but it meant that is why she stopped responding to me. The other alternative was that her mental function had severely decreased, a possibility given the brain damage she had suffered during a period of high methylmalonic acid levels. We assume this is the reason for the hearing loss. We will probably never know the exact cause, and it is not something we dwell on.

From the moment we received her diagnosis, her doctors began discussing the possibility of cochlear implants. I never really considered an alternative. We immediately moved forward. After the required six month hearing aid trial, Monkey received her first implant. She started speaking within a month. A year later, we pushed for a second implant. Monkey's speech skyrocketed. Monkey loves being able to hear. She loves music. She loves singing. But having cochlear implants did not make her un-deaf. She will never hear the way she used to. She still signs. She can't hear in the shower, rain, or swimming. And sometimes, she just plain chooses to immerse herself in silence.

Currently, Monkey is doing very well. Her doctors remain baffled and shocked by just how well she is doing. By looking at her, other than the blinking lights of her CI's, you might not realize there is anything wrong. She attends school in a mainstream classroom fitted with a sound field projection system. (Monkey and Bean's entire school uses sound field systems in all classrooms. It is one of the many reason we moved into this district.) Monkey has not had any major hospitalizations in the past year, other than a planned surgery. She is still monitored closely by her specialists.