My name is Ashley. My family lives in Colorado. Our Family consists of; Myself, Tom, my husband, and our 3 kids, Madelynn she is 8, Jolie she is 5, And Blake aka. "Hydro" who is 2. On November 28, 2009 when Blake was 1 our life took a turn we never expected.
We always knew his head was big, his soft spot was still huge and open, still so far from being closed. Our pediatrician kept telling us "it will close, I don't think anything is wrong with him, we will continue to monitor his head growth". Every time we touched his head, he would scream, when he would get hurt, he was inconsolable.
Well, we figure Blake was fed up with the same story every time we went to the doctors office, so that dreadful day in November, Blake decided it would be cool to see what happens when you pull down 5 stocking holders, mom was dumb enough to have beads wrapped around all of them! It was like a slow motion domino effect watching them all fall, running to try to cover him, not making it in time for the last one to hit him square on the head.
When we took him to the ER, they reluctantly did a CT scan, which revealed moderate Hydrocephalus. I did way too much research! And took him to Children's hospital in Denver, CO to meet with who I thought was a neurosurgeon, but later found he was a neurologist. He told me my son was fine, and bring him back in a year for an MRI. I was astounded! This matched with nothing My husband nor I researched. I was hysterical. I came home, jumped on my computer and found my son's life saver in Phoenix, AZ.
Our first trip to meet him, Dr. Shafron, was over Christmas and New Years. We were sent back home with scripts for multiple MRI's. After those were complete, we found Hydro was eligible for an ETV. We took many trips back and forth from Denver to Phoenix. We had his development assessed and it confirmed what we already knew. He was testing at 16 months of age when he was 25 months, he was so behind in developing. We were on schedule for Dr. Shafron's next available surgery date, 1 week later.
We flew home for a few days, just to fly right back to Phoenix. April 21, 2010 he had his ETV placed. I work in the medical field. I am so over protective, I even asked if I could scrub up and go into the OR! What?! His doctor knows us very well, and began to laugh, which made me laugh! Then I told them all how my little man was a full code. His Doctor said, "I know!" Who thinks of this? A medical mind I guess, which is what I have. I will never forget the anxiety, hope, and fear I felt when I handed him off to the OR nurse. I told her these words "This is Blake my son, the youngest of our 3 kids, we love him dearly, I ask that you protect him, and return him to me safely, thank you." The nurse replied in these exact words "For the next few hours, this is now my son, Blake. I will love him as if he were my own son, I will protect him, and return him to you when the timing is right." I was amazed at this. Her words touched my heart and helped with all the anxiety and fear, along with the Xanax!
His surgery went off without a hitch, and that OR nurse waited for us to arrive in the PICU. She then told me "He is once again your Blake, I loved him and watched over him and I wanted to return him to you." I think she was an angel sent from God.
At his 3 month check up, his head which was at the 100% marking on the chart before the surgery, shrunk by 25%. He had started all therapies, speech, physical, and occupational. He was talking! little words, but he said momma, and Dada, he signed lots of words. He had special shoes to help his balance. Everything was looking up.
Then September 5, 2010, Hydro fell and fractured his skull on a metal flower planter. We took him back to Phoenix for a check up, and some how, someway his ETV is not working properly. His MRI showed his 1st, 2nd and 3rd ventricles were getting bigger, and there in new fluid build up around the port that the doctor left in his head. Once again, my family is leaving on Christmas day to take Hydro back to Phoenix for more tests and to discuss possible surgical options. This news was devastating. He was doing so well. We believe he was born with this, he was an emergency induction, with complications during delivery and the last 2 weeks of pregnancy. But he was beautiful, the little boy we hoped and prayed for. He is still beautiful, and still the little boy we hoped and prayed for! He has an amazing little personality!
I know some how, some way the technology we have in the United States something more efficient needs to be done for Hydrocephalus. We have had shunts since, I believe 1952.
I am attaching 2 pictures, one of Blake before his Surgery on his 2nd birthday, March 14, 2010 and the second of our family in July of this year. My husband and I renewed our vows, to each other, and to our kids, so they all know we will love them and be there for them, sick, thick, thin, and no matter what!