New Mexico HA Walk photo

October 17, Walk for Awareness

I cant believe its already November. On behalf of The Hydrocephalus Association, the board of directors, volunteers, and families affected by hydrocephalus, we would like to express our deepest appreciation for your generous donation toward the 4th Annual Hydrocephalus WALK in New Mexico. Your donation is 100% tax deductible to the fullest extent allowed by law or tax ID #94-3000301. Thanks to your support, our New Mexico 2009 WALK through the Village of los Ranchos de Albuquerque was a tremendous success. With your support we were able to raise over $10,000. More importantly, we increased hydrocephalus awareness in our community and enlarged our circle of support for those affected by this challenging condition. We look forward to seeing you again next year! Thank You!! Kathy

Hydrocephalus Walk/Run for Awareness in New Mexico

I would like to invite you to join us on October 17,2009 for our 4Th annual HA Walk for awareness in New Mexico. For more information go to www.hydroassoc.org click on NM

Just wanted to share a beautiful picture with you

This is a very beautiful picture!

First Day of Kindergarten

Today was Amy's first day of Kindergarten,although she has been attending NMSBVI for the past two years today is still her first day of Kindergarten. The New Mexico School for the Blind and Visual Impaired has the most wonderful and caring Teachers and Therapists, I will truly be sad when the time comes for Amy to go to the first grade which means another school.

Amy's eye appointment

Amy went for her annual eye exam with Dr. Goldblum today. The appointment was almost three and a half hours long, wow!! even though, Amy was such a good girl. Her vision hasn't changed much since last year but I think were going to try glasses again.

Baking

Amy and her sister are baking.

Amy is being a ham!

Amy at play in our summer garden

Amy is sitting in the middle of our summer vegetable garden.

our weekend trip

WOW! our first summer trip, to the beautiful sipapu ski area in New Mexico, The boys had a Trials competition last weekend. It was so nice to be out doors. Amy always loves going camping,we plan on doing lots of it to, as long as we can be together as a family we are happy as can be. Here are a few pictures of my boys Charles the oldest and William my youngest son.

Last Day of School!

This is what I call fun!!! Amy attends the New Mexico School for the Blind and Visually Impaired and they had a water Olympic Day on the last day of school. Amy loves the water, it seems like once she gets in there is no getting her out.I know that Amy is going to miss all of her Teachers and friends.

My new water table

Its been quite a few weeks since Ive updated Amy's blog, time has just passed us by. The school year is almost coming to an end. New Mexico is already getting pretty hot, so we got Amy a new water table and she is having a blast. Amy will be home for a few weeks then she will start summer school, she'll be going two days a week. We are looking forward to summer camping, Amy is getting a new special stroller just in time for all the outdoor activities. Amy is doing so good in her communication, she is using her words well. We will keep the blog updated as much as we can.

Getting Amy to eat

Amy is sometimes hard to feed, she has always had trouble, its not her swallow its her chewing,Amy still has her g-tube in but we only use it for her seizure med's and sometimes liquid's.We now have a great chair that she sits in for meals, similar to the one she uses at school its great. This is Amy one morning before school reading her book waiting for her breakfast.Amy has come a long way in the feeding department, our next goal is to get her to feed herself for every meal.

H.U.G.S

Today is March 1st and we are going to have a HUGS meeting, that's (Hydrocephalus United Group Support) this support group was started four years ago by Margaret Woods and I, Margaret has a beautiful daughter named Abby who also has hydrocephalus and doing well, we would like to reach out to the hydrocephalus public and give all the support we can, we may not have all the answers but we sure can listen. Ill post pictures of the meeting in a later post.

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.

Make photo slide shows at www.OneTrueMedia.com

Make an on-line slideshow at www.OneTrueMedia.com

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.

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.