{This Year 2010}

This year my son you turned 3 years old! What a big boy you are. You have learned so many new things.

You learned how to sign for MORE,FOOD,MILK,WANT,THANK YOU, PLEASE,HELP,FLOWER,BIRD,FISH,CAR and MOMMY.

You have learned to take the pictures from your communication board when you have decided that you want one of the items and give it to us so that we know what you want.

You now can point to all your body parts when we ask you where they are. You can verbally say "yeah" along with nodding your head yes, say "no" {with in this last 2 weeks} and shake your head no.

You can call out and say Daaa when you want your Daddy. You now interact with your favorite Dora and Diego when they are on T.V. You amaze us our little miracle. You also now sleep through the night and that has made us very happy.

You are a big boy and go to Pre-School now on the bus like a big boy where you can play and learn new things. I love the art you bring home to me, I love that I know you did it...do you hear me son YOU DID IT!!

You are such a beautiful,smart, loving boy. We will get you through, we will always be here to

help you with life.

I know you don't always like wearing your leg braces and you hate that there is a walker in the house, that even though we don't push the walker on you, you know what it is for. I know you will come to terms with walking in your own time and it is our job to love you, be patient and support you through the process.

Each day is a new day and with it brings new little things that add up to a whole lot that you do.

We are not finished finding out ways to help you though, Daddy and I will never "be done" trying to find answers and solutions.

We found out from the doctor that the part of your brain that is defective does not explain why you are not walking and talking. So our quest has to continue. We will not rest until we have answered all of the questions. We found out what part of the brain effects speech and we found out that a lack in B1{thiamine} can cause all the delays that you have. We found out that if I was deficient in B1 when I was nursing you that I could have passed on this deficiency to you. I have found out that due to my gastric bypass surgery that I do not absorb B vitamins from food, so even though I took supplements it may not have been enough for both of us. I have set an appointment with the doctor to have your Thiamine levels checked out, I know how much you hate blood work and I am sorry but one day I hope you will understand.

We have discovered that if you are Thiamine deficient that once you start Thiamine treatments the effects can be totally reversible. We have to hope for the best, Hope is all we have to hang onto.

We love you so very much. We will see what the next step in your journey is next week.

{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.

{In the begining}

Daddy and I got married July 15, 2000 we had loved each other since we met in August of 1993. We were so thankful to finally be 1 in this world and to have your wonderful sister Maddy who was 3 when we got married in our life. We wanted to desperately to have you when Maddy was still little so she would have a sibling to grow up with through life. Life was good we bought our first house afew years after we got married, we had everything the "American dream" said we should have we were just missing you. We found out later life had may challenges we had to make it through, we had to change some things before our lives would be ready to bring you into it.

In 2004 I had gastric bypass surgery because I was going to die if I continued on the path that I was on I was almost 400lbs. I could not walk down the street without pain, go grocery shopping without thinking everyone was looking at me because I was so obese or buy a decent pair of shoes because my feet were so large.

My surgery was not without problems. While I was on the operating table when the doctor's thought all was good they ran dye through the reconstructed area of my stomach and found I had a leak where that had worked. They had to open me up all the way to repair the problem. What was supposed to be a 3 hour surgery ended up being the longest 7 hours your Daddy and Grandma ever had to endure. The doctors did not come out to tell them what was wrong and they thought they were going to loose me. After the surgery Daddy and Grandma were escorted to ICU where I had tubes coming out of every opening one could imagine and a breathing tube down my throat, again Daddy and Grandma thought they would never see me again.

Daddy couldn't stay that night so he had to go home. The next day he endured the worse ice storm our area had had in several years they shut down the freeway right after he go on it to drive to Portland. It took Daddy 3 hours to make it to me. Daddy stayed in the hospital the whole time I was there they gave mommy a suit of her own and brought in an extra bed so he could be with me. The hospital's care was little to be desired. Daddy was so diligent, he would wash my hair and clean me up every day. He made sure I had all the things I would need when I returned home from the hospital. Your Daddy is and was the most amazing man ever created.

I came home after the hospital and with much support from your Daddy I lost over 200 lbs in the next year.

One challenge down one to go. In 2005 Daddy all of a sudden started getting dizzy loosing his balance when he would close his eyes and being in allot of pain. He had all the symptoms of small cell lung cancer so the Doctor ordered an MRI. We had the MRI on a Friday and that weekend was the longest weekend of our lives so worried as to what the diagnosis would be. We thought the worst as cancer runs in Daddy's family. One night I was in the shower and I started to cry out as I was so fearful I was about to loose the love of my life and would have no physical evidence of the love we shared. I began begging "Dear Lord you have given me the most wonderful husband and if you take him from me I will have nothing to show for our beautiful marriage."

The Lord heard me loud and clear. We found out on the following Monday that Daddy had to have neck surgery that he did not have cancer but that he had disks compressing on his spinal cord. We were relieved to say the least. I took time off work so I could care for Daddy and while we were home one day I went to the pharmacy to pick up Daddy's prescriptions. While I was there I realized that I had not had my cycle, I bought a pregnancy test, came home took the test but left it sitting on the counter as I had taken many before with no positive outcome so I forgot all about it. Later that evening when I was helping Daddy into the shower I glanced over at the test that I had forgotten about and it was showing positive...What?? Really?? Now way, I thought as Daddy about passed out. After Daddy finished cleaning himself up I ran right to the store and got 2 more tests, They immediately turned positive!!! Wow! I was finally going to have the baby we always wanted but had been convinced would never come to us.

I went to the doctor the following week and found I was 5 weeks the ultra sound showed you still in the egg sack. The doctor I had at the time then said I had a heart shaped uterus and this could cause a problem that I may not be able to carry you to term. This was not the news We wanted to hear. We still got excited and put the possibility of loosing you out of our minds. We of course went out and started to buy everything we would need to bring you home. Time went on and one day after I got off work Daddy and I were in the grocery store when all of a sudden I felt very wet. I went to the bathroom thinking I had just wet my pants but I was not prepared to find what I did...blood and lost of it! I ran out of the bathroom to Daddy who was standing waiting with a cart full of groceries we had to still pay for, I told him what was happening and we rushed to the car to get to the hospital. One the way there I called my doctor who told me to go to ER but that if I was loosing you nothing could be done. We then got to the hospital and the triage nurse tried to tell us to have a seat in the waiting room that if I was loosing you there is nothing they could do. Daddy was not OK with the response, he got in the nurses face and proceeded to threaten the hospital if they did not get me into the back ASAP. The nurse called security but it worked as they had me in a room within the next 5 minutes.

While there we had an ultra sound and found your heart beat was very strong, my cervix was still closed and the ER doctor told me that if I went home and stayed off my feet that we would have a chance at keeping you.

I went home, fired the first doctor I had and found a new one. The next day while I was home Daddy came to check on me while he was on his lunch break everything seemed to have calmed down and the bleeding was minimal. After Daddy left I had to go to the bathroom I got up and my heart left my body, I started to cramp and I was passing clots literally the size of apples. I panicked started to cry and I started to put all the stuff that was coming out into a plastic bag. I called Daddy we went to ER again this time we were rushed right to the back. They examined the con tense of the bag and found that you were not in it so they did another ultra sound and found there you were still safe and sound heart beating strong as ever, and my cervix was still closed.

While we were there we had a new ER doctor who read the results of the ultra sound from the day before, he advised us that I had a Subcorionic Hemotoma. Basically it was a blood clot that was between the uterine wall and the sack you were in. It was larger than you were and that the probability of carrying you passed 25 weeks was grim. The doctor told us again to go home and stay off my feet but no answers on how we could combat this evil thing that threatened to take you from us.

After we got home we were very sad and I looked up the diagnosis online and found that there was a high morality rate. I also found that some women had taken baby aspirin to help thin the blood. I went to our new doctor the next day she started me on an aspirin treatment and we had weekly ultra sounds to watch the hemotoma. You eventually grew larger than the hemotoma and it started to shrink. We finally were able to be happy about you and not worry if you were going to make it. At 27 weeks I was let off bed rest as you had reached the point of viability.

We were finally excited again, we put your little room together and enjoyed watching you develop via the ultra sounds. We were able to have one for every week of your little developing life from 12 weeks on.

On November 16, 2006 Daddy, Grandma and myself went out to dinner to Red Robbin, while we were there my water broke. We rushed to the hospital, I was not in allot of pain and after afew hours they gave me drugs to speed the process along. While in labor it became a bit touch and go as your heart rate would decelerate so they kept flipping me over turning me every which way to keep your heart rate up. It was a very long and painful 11 hours. I finally was able to get an epidural to block the pain, once I got that I went from 7-10cm in 20 minutes. the doctor was called and before she could even get dressed you were crowning. I pushed 10 times and you were then finally here!! they handed you to me and you immediately pooped on me. You were so tiny and skinny 6lb 9oz and 19" long. Your skin was all wrinkled as you didn't have much fat to fill it in. You were not all white and bloody you were pink and looked like you had just been swimming.

All of your infant tests came back normal you were just a little jaundice.

Mommy didn't like the nurses at the hospital so once you showed signed of feeding well I convinced the doctor to let us go home. It was 24 hours after I had you. I had no problem feeding you and the jaundice went away in good time. You were the perfect baby you slept allot we were so excited to have you home. Our family was finally complete.