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About Me
My story begins in Las Delicias, Costa Rica. I live on a peninsula and I have a beautiful view of the ocean from my bedroom. My mom and dad had been planning my arrival for many years. They realized that their lives would not be complete in paradise without a family of their own. This is where I come into the picture!
My mom’s pregnancy started out smoothly. During her pregnancy she always put me first; she ate great and exercised regularly. It was not until 26 weeks that she learned that I was small. My mom and dad began to worry for the first time about me. My mom’s doctor decided to test her for various infections. The lab results were positive for Citomegalovirus. This is a very common virus in children and adults. Fifty to 80 percent of adults in the United States have contracted the virus before they reach the age of 40. Boy, did my parents start to worry then.
My next ultrasound showed my lateral ventricles were dilated and that I had a murmur in my heart. At 36 weeks, I was still small and my mom’s doctor told her that if I did not gain more weight in the next two weeks, it would be better to take me out. At 38 weeks, my mom had a planned cesarean and out I came! The doctors took me to another room to make sure I was okay; my dad came along to keep an eye on me. Soon I was ready to see my mom and have her hold and kiss me.
They tested me right away for the CMV virus. Everyone was so happy that it came back negative! Things were looking up! Yes, I was small--a mere 4.5 pounds--but I was doing well out of my mom’s tummy! Two days later we went to the home we were renting in the mountains above San Jose. My mom and dad wanted to stick around the city a few more days before we went home. My pediatrician wanted me to have an ultrasound on my brain and to see a pediatric cardiologist. This was probably the hardest day for my mom and dad.
The doctor who did the ultrasound told my mom and dad that I had lissencephaly. They did not know what that word meant only that it sounded serious. The doctor did not say much. She was indifferent to my parents and told them that she did not know how I would turn out. We then went to see the cardiologist who told my mom and dad that I had two small holes in my heart. We went home and my parents shed many tears for me as they were very scared. From that moment, we started on our path of finding out as much as we could about lissencephaly. Even though it was difficult for my parents to accept how this came to be, they were fortunate to find a great network called the Lissencephaly Loop. Here my parents found much support, information, and first-hand knowledge from the familes who have lived the journey of lissencephaly.
After my mom and dad accepted that I had lissencephaly, we started moving forward. Early on, I enrolled in therapy to assist my development and I probably exercise more every day than most Olympic athletes.
I was only two weeks old when my parents started my workouts! I had to do lots of tummy time! Since we live very far away from medical facilities, my mom and dad have learned a lot about different therapies. My mom has bought every book on helping me develop. And we work out at least two times a day! My therapist in Costa Rica introduced me to Craniosacral Therapy. I liked it so much that my mom took a course in Craniosacral Therapy for infants. It has helped me and I like the way it makes me feel. One of my favorite things to do is yoga. I am really good at it and I like all the different positions my mommy puts me in. One day I hope to do the inverted headstand!
We have many adventures here. Just for me to see my pediatrician and therapists, I have to drive an hour, take a ferry (hopefully we get on), ride across the Pacific Ocean, then drive another two hours to get to the city. We usually leave our house at 10 a.m. and we will get to San Jose by 3 p.m. (if all goes well). The journey always makes me tired, so we only go in about once a month. We do have a small airport close by and if I had to get to the city fast, I could be there within an hour.
My parents took me to Texas to see a neurologist who specializes in lissencephaly. He saw my MRI and said I probably had Miller Dieker Syndrome. He said I would need to do a genetic test called FISH to find out for sure. I am lucky to have been born in Costa Rica. I was able to have the advanced FISH test done at the Children’s Hospital and we are fortunate that this facility is considered the best in Central America. The doctors have been kind to me and informative to my parents. My mom and dad are going to have the FISH test done to see if one of them carries a rearrangement of one copy of their own chromosome 17. We are hoping that is not the case because my mom and dad want to give me a brother or sister. That could be fun!
I had my first infantile spasm when I was seven months old. We tried Prednisone but it did not help. It made me very irritable and I did not want to sleep. I did not stay on it for long. Right now I am trying Vigabatrin. It is really important that we get my seizures under control because they cause me more brain damage and each time I have one I regress and lose much of what my mom and dad have taught me.
I am really lucky as I eat orally and do not have a gastronomical tube. My mom makes most of my food and I get to eat yummy bananas, papayas and mangos from our land. It takes me awhile to eat but my mom and dad have lots of patience with me. I like gourmet food, not fast food anyway!
A typical day for me starts early--around 5:30 a.m. We have breakfast, then my dad takes me for a stroll through our orchard and we pick fruit from the trees. After we get back, my mom works out with me for an hour and then I get to take it easy until sunset. At sunset we do yoga; sometimes on our balcony and sometimes on our lawn. At sunset the parrots are singing and flying all over, and the monkeys like to come out and chant their songs! I really like the parrots and the way they sound. My mom gives me Sundays off. In Costa Rica, nobody works on Sundays!
I will be nine months old on March 17th. When I was first diagnosed, it was very difficult to accept that my life would be anything but normal. However, now I believe that being anything BUT normal is exceptional. My mom and dad have a lot of faith and I have a wonderful support group of family and friends. We take each day at a time and are thankful for how blessed we are.
There are some who say I won’t be able to do things. However, this is my story and I have yet to write it. I hope you will continue to check on me, as I plan to write many chapters in my book!
June 17th 2008 My birthday!
I finally have chubby cheeks!
Just relaxin'
Weighing in at the local corner store
The Chosen One
I had a dream the other night
It came to me so clear
I stood before the throne of God
Afraid to come near
God said to me "I hear your prayers"
There are answers you can't find
I've asked you here to talk to me
And help to ease your mind
I said, "Well, yes God, I am upset
About my special one
This punishment is awfully harsh
What have we ever done?"
God looked at me and shook his head
and said you've got it wrong
I sent this special child to you
because you are so strong!
I searched and searched to find someone
With love so true and rare
A parent so unselfish
That could give this special care
I try and save my special gifts
Like those you're speaking of
For special kinds of parents
I call the "Chosen Ones"
Of all the ones to choose from
Think this I have done
A parent who deserves the best
An honor you have won.
