Katelyn - Arizona

My name is Katelyn Marie I was born November 6th, 2003. I have a big brother named Michael and became a big sister in December 2012; my baby brother’s name is James! On July 9th 2014 my daddy adopted my big brother and I! I love my family and our gaggle of pets! I love Mickey Mouse, sports, water, and spending time outside when the weather is cool.

I was born with Congenital CMV, a preventable but little known virus. Because of the cCMV I have Severe Brain Abnormalities, Brain Calcifications, Spastic quadriplegia (more commonly referred to as cerebral palsy), Epilepsy, Severe/Profound Hearing loss in my right ear, Moderate/Severe Hearing loss in my left ear, Cortical Audio Impairment (CAI), Peripheral Scaring on my left eye caused by the cCMV, Intermediate Estropia, Cortical Visual Impairment (CVI) this makes it hard for me to us my vision and fine motor skills at the same time, Severe Reflux, I used to aspirate and have a delayed swallow reflex but with oral training over the years I am doing much better, and Severe Developmental Delays. My most recent diagnosis is Scoliosis due to my posture from the Spastic CP, doctors say back surgery is inevitable.

I use a hearing aid on my left ear and a cochlear implant on the right, glasses, wheel chair, Botox injections to my upper extremities and thumbs, arm splints, wrist splints, AFOs, a snazzy back brace and an iPad for communication. I have had several surgeries. March 2006, I received a G-Tube along with a Nissen Fundoplication to help with my reflux and resolve my "failure to thrive" diagnosis. I am now almost 12 years old, 52” tall and 45lbs! Just recently our nutritionist has asked us to add a calorie supplement to my formula, she and my doctor would like to see me gain a few more pounds. September 2007 was a tonsillectomy, adenoidectomy, and ear tubes. May 2008 I received my Cochlear Implant. January 2009 (Bilateral Hip Adductor Tenotomy and Bilateral Varus Derotational Asteotomy), recovery was long and painful with less than desirable results. During recovery I used a S.W.A.S.H. brace to keep my hips, pelvis, and lower back in line until the inevitable 2nd surgery. 2nd hip surgery was November 2010 and this time it was only the left side, my mom insisted on a Spica cast because of my spasticity issues and I was in a cast from the waist down for 8 weeks. We stayed optimistic about this surgery, but my mom was scared for me. I have recovered wonderfully although there is still scissoring and I still cannot sit like I could prior to the 1st surgery, but I have more range of motion. Since the 2010 surgery I have received a Prime Engineering Kidwalk and love to be Mobil, sadly I’m growing out of it quicker than we would like. We are currently awaiting approval for a new Grillo gate trainer that should take me into adulthood. I am scheduled for a right bicep release and right wrist fusion in January 2016. These surgeries are hard on my family but I know that my mom and dad only do what they believe will provide me with the best quality of life.

My epilepsy has been well controlled the past 6 years. Recently I have had a lot of seizures and seizure activity. I have been put on a new medicine that seems to help. Currently I take 3 seizure meds, but hope to wean off one of them in time. My technical seizure diagnosis is Generalized Seizure Disorder with both convulsive and non-convulsive seizures; this diagnosis includes Grand Mal and Petite Mal Seizures. Out of all of my diagnoses, the seizures are my least favorite.

I started preschool at the Cooperative Preschool for Dual Sensory Impairments and Multiple Disabilities located at the Arizona Foundation for Blind Children (FBC) in November 2006 and thrived there! I continued at FBC through the 4th Grade in their Primary Education Program (PEP). Starting the 2014-15 school year I started a new journey at our home school district as a 5th grader as I aged out of the FBC program. The transition has not been smooth as my mom and I had hoped. There have been a lot of meetings and struggles this past year. As I started the 6th grade we cleared our minds to start positive and optimistic with at new teacher. My mom and the school district are working hard to provide me with an appropriate and dignified education. There is so much I want to do; I just need to figure out how to do it in this body that I cannot necessarily control. But just you wait—you are going to be amazed at what I will be able to accomplish! I won't let CMV get me down, I'm a beautiful girl with a pretty smile. I have an awesome personality and a contagious laugh! Everyone who meets me falls in love with me! I am a strong, happy, and determined girl!

--Shared by her mother, Heather