{The First Two Years}

Your first year was full of different emotions. As any parent would Daddy and I would take you in for your well-check appointments. As afew moths had passed at about 5 months of age we along with your doctor noticed you were not meeting the milestones like you should. This was frightening to us but we were advised that not all children follow the same path and to keep an eye on your development. We did not know what or how to feel about this. At 6 months of age our doctor suggested we take you up to the Child Development Center in Portland at OHSU to have tests done to find out why you were so delayed. We were put on a long waiting list this was a long wait as we did not understand why all you could do was lay there with no real sounds being made or eye contact.

Finally in December of 2007 we were able to see the specialists in OHSU, they ran a battery of physical tests and we were told they were concerned that you may have anything from Muscular Dystrophy to Parader Willie{mental retardation}. The doctors ordered blood work at that time to rule out any life threatening or shortening syndromes and also to look at your DNA and Genetic makeup. Again we waited for the results all along worrying that you our wonderful miracle who fought against the odds to make it to breath in this world and be apart of our lives might have something that would take you from us prematurely.

A couple weeks later we got the results and Hallelujah! We did not have anything that would take you away from us. The doctors said that they could only find that one of your pinkie fingers was shorter than it should be and that you were otherwise normal and health. This was a relief but we still could not understand why you were not developing. They told us you had "Global Developmental Delay" and that we just needed to get you into Occupational and Physical Therapy.We would come to realize later this was what doctor's say when they really don't know what is wrong.

We immediately went home and contacted Special Services through the school system who would send out the therapists to our home to work with you along with getting you into private therapies at a therapy center.

Time went on and you slowly started doing new things at 10 months you finally sat up on your own. 11 months you could hold your own bottle and you were starting to laugh,smile and make some grunting noises. Still you were not rolling, crawling or turning your head when someone said your name. We along with the home therapists started to wonder if you were Autistic, however you were still to little to run any official tests for this.

Your 1st Birthday came and we were happy of course but we also we very sad as we wanted you to be like all the other kids and be able to play like them.

We were told after our first visit in Portland that we needed to follow up with them in 1 year. during the journey to your 2ND year life was more challenging for Daddy and myself. Raising you was much harder than we expected and not as carefree and happy as we thought it would be. We knew that we loved you beyond a shadow of a doubt but all the sadness and trying to find out what was wrong began to take its tole on Daddy and I. We separated when you were 20 months. We did not however stay apart long as we both new that not only did we love you but we could not deny the love we had for one another. We had to learn to not let our life's challenges get in the way of the love that brought you to us in the first place. Daddy and I came back together in October of 2008 right before your 2ND birthday.

On your second birthday you were moving right along you started to get around the house by scooting on your rear-end, you were making more sounds, starting to point to objects and you were acknowledging people when they said your name.

Shortly after your turned 2 we had you evaluated for Autism, and although you maintain allot of autistic behaviors you were to social to have the diagnosis. So again we had no official reason why you were still not walking, talking etc..

We went to the doctors and insisted that they give you an MRI of your brain. We were scared to have this done but it seemed to be the only thing we had not yet tried up to this point. In April of 2009 we had it done and what we found out was not at all what we wanted to hear. The doctor read the results over the phone and all he told us was that your neurons did not develop correctly in the womb, that you had a non-operable brain defect. The doctor could not label it for us.


Being the persistent parents that we are were not satisfied with this so we managed to get an appointment with a world-renowned doctor at Emanuel Children's Hospital in Portland. Again, we had to wait to see her, while waiting we got online again and found a defect called Heterotopia. This seemed to fit the description the previous doctor had given us. However, there were a couple different types and we did not know which one you had or the severity of it. We finally had the appointment with the new specialist and when I first walked in she had the MRI results I asked her if you had Heterotopia she said yes. She then confirmed all we had read in that this could cause delay that she was certain you would probably walk but she was not convinced that you would ever speak.

This was bitter sweet as we finally had a diagnosis but we could not fix it.

In the following months we had an appointment with a neurologist to get an even clearer picture of the situation what his opinion or prognosis was and what our future may hold.

We were told that the part of your brain that was affected was your ventricles that you had to be exact Periventricular Nodule Heterotopia, PVNH for short.This meant that you have clusters of neurons that did not go where they were supposed to go that they stayed bunched up in the rear fluid part of your brain. We were told that you may develop a seizure disorder that this was a rare defect especially in boys as they have a high death rate in utero and up to the 1st year of life.So again we found out that you our little miracle had beet the odds one more time by even being born.


We started proactively looking into different medications and searching the Internet to find other parents with children with this disorder. We had no choice but to become the experts of your condition as whenever your diagnosis was mentioned even to medical professionals we had to educate them on what it was.

We started teaching you sign language, putting pictures up around the house and continued working with you on your physical therapy. We contacted the media and Fox News did a story on you because we wanted to bring to light your situation. We also made appointments with sleep doctors as you up to this point had been waking in the night since you were a newborn.
We wanted to desperately to help you communicate since the doctor said you were a normal little boy trapped in a body that would not cooperate. We could not begin to imagine the frustration you had not being able to tell us all the things you were learning and wanted.