Harry's Journey

The story of Javier and his MPEI.

English is not my first language, please excuse spelling or grammatical errors.
My wife was pregnancy was complicated and full of problems. She lost blood at the beginning (2 month of gestation) that resulted in a difficult pregnancy. She also had uterine myomas, detachment of the placenta from  4 months. All this took my wife to a complete rest and a strict control of pregnancy. Since 4 or 5 months pregnancy was completely normal, and three days before reaching the 17-12-2007, a baby born with precious 3.5 kg and a test adgar of 10/10. The birth was natural and finish, although delivery was about 10 hours of dilation. We noticed that at birth is not much crying, he never even cried when he had to eat, he was always very asleep.

After 6 days our son had a wink in his right eye and lifted his right arm a bit. We saw no significance, but over time this was done more and more, until the 20 days started to have breathing difficulties. we carried him to the hospital and there started our nightmare. The first week phenobarbital what cure completely and neurologists thought they could deal with the neonatal convulsions benign, but returned a week seizures. All the tests they did on Javier were negative. They described Javier as having criptogenica epilepsy. At four weeks  his EEG worsened and Dr. Properties discovered that our son had MPEI. We seek a second opinion Dr. Coopola (neurologist who defined this epilepsy) and Dr. Jaime FIELDS CASTELLO, and the two also diagnosed this terrible epilepsy. Then began to use all kinds of anticonvulsants inhibiting seizures and none ofthem worked for our son, and the worst is when they started to affect his breathing and the heart. Javier fought bravely until one spring morning 31-3-2008, We said goodbye to our son and he went to heaven, in a quiet way and without suffering.

I wrote this from Javiers point of view

My walk through the hospital.

One cold winter morning of January 9, 2008, that my parents never forget, I entered the hospital. I did not know very well what happened to me, but the doctors told my parents in a very delicate way that it was a crisis. I had heard of a cold, colic, some angina, a fearsome bronchiolitis even whooping cough, but what crisis?. My dad thought that a crisis was just something bad that happened in the economy. And in the beginning my dad is not so serious that sounded like that, that the crisis in the economy are temporary (or as my papa would say in terms of economy, "crises are cyclical" comes after recovery) and the health, with advances tegnológicos there today, not going to be less. So the Drs began to do all kinds of tests, with so many wires and needles , and although some tests hurt me more than others I was very brave and  my dad always told me that I am a fighter.


  The Drs initially gave me a syrup which worked very well and crises disappeared, but when I was going to build my cot in my new room, a Tuesday  the ogre came out of the cave again and i felt ill again. Then I slept much time dreaming of angels with my own friends, who knew of cielito only woke up when I know that it was no longer in the cradle of principle, also had many cables and devices connected to my body and the worst part is that beeps were appalling, who did not sleep there, so I had to put more sedative to sleep. So as beeps and the ogre still not allowed me to sleep, I increased the dose, so I was still dreaming and I felt happy. When I woke up was with my parents and a bunch of nurses and doctors, who did more than touch and talk things we did not understand, but I just dreamed and dreamed. Occasionally titos and my grandparents came to visit me but also not being allowed to pass to me and I had to watch from a window, but I know well that once slipped another without permission to see me, I want muchísssimo is normal. And while he dreamed and dreamed always felt a gentle voice to me whispered words of love and some warm hands to me acariciaban. Until one day I dressed for huertano, that I am Murciano, and I spent very well that day I wake up and I took a bunch of photos with everyone, with the nurses, my grandparents, my titos, my parents. The truth is I was so happy dreaming that angelicos no longer wanted to leave, and that one of them named Kimberly (and that I had made a friend of her in the ICU) told me that we had to join together to go Cielito. But before I wanted to bid farewell to my parents so they waited to tardón my dad who always arrived late in the morning to visit me, and I wait with open ojitos to tell which are not sad for me that I will be always alive in their hearts and that I opened my eyes without fear and look at my potatoes from cielito and return to smile with happiness, ah! And tell them to my grandparents, my titos and especially my primito Santiagito (that I want and that I want them) not to forget my I always love them. Do not cry daddy that soon we will be together in the cielito

Javi your special child
Hello Mom, I am your Javi . I reached the world by the hand of God, because I am an angel sent by him to be a kid all my life.
You are beautiful mom, as you saw before birth, when dreamed  of holding me in your arms, and your voice soft acariciarme I sang.
Thank you and I ask forgiveness.
Thank you for being my mom and forgiveness for not being the child that you expected. But I am well, I am a special child and teach you to love me, as I already love you.
I will be your child and you sing, if you want to listen.
I will be your child and walk next to you, if I leave accompany.
Come mom takes my hand, enséñame the road of life, do not be afraid I will always be at your side.
Ámame, I love you mom, show me the sun, sea and the moon.
I will be for you and the sun calentaré your days, I will be for you the moon and go every night for your window.
Perhaps your child dreamed that someday it would be an architect, a doctor or a firefighter, but instead I will be always a child, I will be at your side looking for your eyes, your warmth, love your mom.
Your hands soft acariciaron my little body, your lips kissed my face ojitos large and long eyelashes.
Now I feel your warmth and love, I view with tenderness and no longer wet with your crying.
I discovered your smile, you are beautiful and sweet mom, do not be afraid to love me.
I am your special child (or your bebote your affectionately as I said) and I love you Mom.
  This goes for all children's special world and mothers to bring angels of God to the world. This letter was inspired by the soul of Javier and written through the heart of their fathers.
Thanks for having known you have brought out the best in both of us and filled our hearts with love eternal.

Our infinite gratitude to the hospital Virgen de la Arrixaca Murcia, and especially to all professionals and as people have responded to our child care, beyond their duties as nurses and doctors, the only medicine that has cured our son , and that does not require a prescription, that is called love.  You have been our comfort, our foothold in difficult times, our hope in our despair, our psychologists, we have always found a kind word he has alleviated the pain, you made that the hospital is our home a place warm and comfortable, ultimately you have also been a bit of our dads Javi, perfect for an imperfect world.  Our agracedimiento infinite also to all members of this forum, that makes it possible through this site, we do not feel alone and so rare in this world of nightmare. With your help we were able to overcome this bitter journey. You are wonderful people and we are fortunate to able known.

 

Javiers Parents, Alicia and Felipe, can be contacted on felipelopezfernandez@hotmail.com