Kylie (2008)

Kylie (2006)

Kylie and her new blankie (2005)

aww... I love my brother

Hi! My name is Kylie. I was born full term. I had a head full of dark hair and had blue eyes. I was 7 pounds 8.4 ounces and was 20 inches long. Three months after I was born mommy and daddy started to notice strange symptoms: swollen legs, bluish face and extremities, fussiness, trouble breathing which mommy suspected might be related to a heart murmur doctors had told her was innocent. My heart murmur was not innocent. I was diagnosed at 4 months of age with congenital heart defects called pulmonary stenosis (my case was severe at the time), where blood flow from the heart to the pulmonary artery is blocked, and atrial septal defect, a hole in the walls of my top two chambers. These are life-threatening without surgery. I had intervention done on my pulmonary valve in September 2004. I currently have minimal blockage and still have the hole in my heart. The hole is a smaller-sized hole, so they just want to watch it for awhile since there is no health risk and there is still a chance for it to close on its own. I will need to take antibiotics for any surgical and dental procedures. I will continue to see my team of cardiologists. I was diagnosed with Noonan Syndrome March 23, 2006. My brother and mommy have Noonan Syndrome as well, it's hereditary.

I currently attend a special needs preschool and receive occupational therapy, physical therapy, education and speech. My gross motor skills are delayed and I am receiving physical therapy to help me walk better and do other things. My brother and I also have what is called Sensory Integration Dysfunction. Sensory Integration Dysfunction is the inability of the brain to correctly process information brought in by the senses. I have been through numerous blood tests, x-rays, hospital stays, doctors visits and ER visits.

One thing mommy has learned through all of this is that she has learned to tell herself all the time, that babies are not all born healthy, and whether they have 10 fingers and 10 toes is really not so important. It's all just part of parenting. If you aren't willing to accept having a child with a problem, you just shouldn't have kids because the odds are there. Most people out there aren't taught this and until you have something hit you up close in the face, you just aren't aware that it doesn't always go the way you expect. We have learned and grown from our experience so far. When you are hit with something like this, it doesn't mean we aren't good parents. It just means that we are learning about something that no parent ever expects to have to learn about.