today is February 28th and I've just finished the video for our New Mexico 2008 Walk, to improve the lives of people affected by hydrocephalus I hope you enjoy this as much as I enjoyed making it. This year will be our 4th year, we would like it to be even bigger and better then the last.
Saturday, February 28, 2009
Friday, February 27, 2009
Thursday, February 26, 2009
Amy's brothers and sister
today is February the 26Th, 2009 and I though I would share with you my three other amazing children, Charles my oldest along with William my middle child love there motocross, they have been riding since they could walk it used to scare me,but now after going through all of what we have gone through with Amy, only God is in control. Selina however is my shy one she can also ride a motorcycle but chooses to do things with Amy and I. Amy loves her brothers and sister so much , I can only say we are all better people for having Amy in our life's I know some days are so very hard for us when we cant go out to eat or go to a movie together , but we know our life is different know and we do the best we can, as long as we do it together! so here is my family.
Tuesday, February 24, 2009
As I grow and learn
today is Tuesday and I've just started blogging so I know that I've skipped so much, but as i get time I will write in more details. Amy is now five years old she is doing extremely well considering what she has endured through the years past with so many different surgeries, Amy has had two eye surgeries six shunt revisions, that means twelve brain surgeries, that is externalizing and internalizing and a hernia surgeries. I think that's allot for a little girl ,that's why she is our hero. Amy attends the school for the visually impaired she loves school looks forward to it everyday. Amy also has a hard time keeping her balance and she shakes her head back and forth, the Dr's say its a visual stimulation for visually impaired people,its hard to understand, so we just go with it, we try to live day to day and enjoy each moment with our children.
The Day we found out
My husband and I were very excited and very surprised that we were going to have our fourth child, the baby would be due on October 31st. On a routine ultrasound (at my 25th week) my family and I were all in the room, my then ten, eight, and four year old. We were all very excited to know what we were having, the room became quiet, as the tech rolled the wand over my belly I asked her what was wrong? she looked at us with fright, and said to my husband and I and are three small children "the baby does not have a brain" I was shocked, then she said the Dr. would explain everything to me. This was all said in front of my small children, it will always be in there minds as it is in mine forever. well to make a long story short, we needed another opinion we saw another Dr. the next day and that Dr. said she had holopronensephaly and would not make it to birth the risk would be to great for me and I could possibly die from over extension of my uterus, they would then try to encourage me to terminate the pregnancy and "you have one week to decide" because after 26 weeks its a baby, and how I was so angry, I needed still another opinion,and I thank God I did because Dr. Herly whom I saw last was very upset they told me all of what they did, because she did have a brain, she had hydrocephalus and this child a girl that we named Amy deserved a chance.Amy was born 9-18-03 via c-section. Shunted at birth,the shunt failed at eight month old, she had a revision went home the next day, came back because she was very ill. Well she had contracted a staph infection, Amy was in the hospital for the next 4 month she received shunt after shunt after shunt.Amy was now one year old in the hospital it was very sad for us all.The last shunt Amy revived in this hospital in N.M., during surgery they perforated her bowel,she was so septic, we were loosing her. The Dr.just said I don't know what else to do? I said needed to get her out NOW! we were flown to Salt Lake City where Dr.John Kestle would save my baby's life, Amy is doing wonderful she has cortical visual impairment a G-Tube and some learning disabilities. We take one day at a time, love all the time, play most of the time.Amy is our HERO. I have now started a walk-a-thon her in NEW MEXICO because I want to raise awareness in our state and support to any other parents dealing with Hydrocephalus.
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