The What and The Why

This is a fund raising blog, for the most part. We covet your prayers for Seth above all other things, but we do hope you will be able to help us in some other way as well! We are currently working on some fund raising events that we will keep you posted on - and you can also donate any time by clicking the "donate" button at the side of this page. All donations are tax deductible through The Ortiz Family Foundation.

What are we raising funds for? Three things that are immediate needs for Seth.

First, a service dog. We arent one hundred percent certain of exactly what kind of service dog will fit Seth's needs, that's something that will have to be decided with the help of the company that trains these dogs for service. The dogs cost $22,000 to train, and the families must raise at least $13,000 on their own. Then, we must fly to the facility to be trained ourselves for two weeks, which is an added cost. Service dogs also cost around $1000-2000 to maintain yearly.

Second, a vestibular rocking chair. Seth's brain needs vestibular input. A way to get vestibular input is to swing, rock, jump, spin, etc. Seth has always loved to be what we call "manhandled" - tossed around, rocked. When you are holding him he would be quite content to throw or rock himself backwards all day long! If we could buy him a vestibular rocking chair, he could rock on his own at the appropriate times and in a more socially acceptable way. If he is able to get enough vestibular input from a rocking chair, our hope is that it would allow him to focus on other developmental skills when necessary rather than trying to rock all the time. This chair costs around $2000, plus shipping.

(To understand better what the vestibular system is and what a person with sensory issues tend to do and need, please check out this page).

Third, a bed. Not just any bed, but a very special bed for a very special boy. Two major issues that keep Seth from being safe as he sleeps are his seizures and his lack of ability to see. He has a tendency to bang his head and injure himself when he wakes up and is playing in his crib. He has also had seizures in the night that have caused him to whack himself pretty hard, and as he grows & becomes stronger, the injuries will become worse. The Courtney Bed is a great solution to these problems. It is padded and completely enclosed in mesh, so that a person cannot fall out of it or wander during the night. This bed is expensive. It costs $5,500 without any help from insurance - insurance will not cover this bed in certain states, and most likely, ours is one of them. However, the creator/seller of this bed is willing to lower the cost of $4000 if insurance doesnt cover any part of it & we are able to raise that much on our own.

Seth's needs are great....but we know that God is greater! If you feel led to donate - every dollar helps and we appreciate it more than you could know! Please continue to pray for our sweet little guy....more updates to come in the (very) near future!

Seth's Story

"Most of the shadows of this life are caused by our standing in our own sunshine"

~Ralph Waldo Emerson

On June 22, 2009, a big, beautiful red headed boy came into this cold, harsh world. It was an easy delivery, a fast (and natural!) event - after so many months of waiting, we welcomed 9 pound 1 ounce Seth John Asher with happy, loving arms! Seth was perfect. He cried, he was pink, he ate well and slept well. He was such a blessing and a gift! Our daughter, Sydney, now had a baby brother, and we had a son! After a few very rough weeks for our family, we finally had our precious, beautiful boy...and for a moment, all was right with the world.

On June 23, 2009, roughly 18 hours after his birth, Seth was whisked away to the newborn nursery with what the nurse called "delayed breathing". Shortly after that, he was taken to the NICU with low O2 levels. Seth was placed on oxygen, and at this time it was discovered he had an enlarged liver & spleen. All they could tell us was that it meant he was fighting some sort of infection. "Do you have cats?" became a popular question. No, we dont have cats. Please dont ask us that anymore.

June 24th-25th were spent testing. Bloodwork, urine, MRI, ultrasounds - Friday, the 26th, Seth had an MRI of his brain, where they discovered extensive calcifications. We were told this was indicative of him having contracted CMV in utero. CMV? We had never even heard of it. By Saturday, the results were in and Seth was officially diagnosed with congenital human cytomegalovirus. Congenital means "born with". cCMV. Our son had contracted a virus while still in the safety of the womb, a virus that had ravaged his small body...and we never even had a clue.

The list of "abnormal" was long. Seth had breathing issues, low platelets, enlarged liver & spleen, severe kidney reflux, two holes in his heart & extensive brain calcifications, as well as a small cerebrum & cerebellum and underdeveloped optic nerve in his left eye. His prognosis was mixed. One doctor said he may have some learning disabilities, one said he would never be anything close to "normal". He spent 11 days in the NICU and then we took him home....to a world of fear, anxiety, guilt, sadness, wonder. Google became our best friend as well as our biggest enemy. We couldnt understand it - here was this horrible virus that can wreak so much havoc on an unborn baby, and we had never even heard of it!? And what would this mean for our precious boy, what would his future hold? We wanted to believe cCMV would not define our son, that cCMV would not define his life. We still believe that.

Today, Seth is a joy. Each day is a gift, and we are so thankful for his presence in our lives. It's been a hard 20 months, and it has flown by. Seth has had multiple surgeries - two for the kidney reflux as well as placement of ear tubes. He has had a total of 11 urinary tract infections. He has been diagnosed with mixed cerebral palsy, optic nerve hypoplasia and cortical vision impairment. He is legally blind.

Seth has been dealing with infantile spasms - or West Syndrome - for a little over a year now. He has been on every medication possible in an attempt to control his seizures. Ninety-eight percent of the time, this particular seizure disorder will develop into another kind of seizure disorder. We are prepared for a life of seizure medications for Seth. It's hard to watch him spasm, it's hard to wake up in the morning to find blood on his sheets and his clothes, and know he bit something during a nighttime seizure. Sometimes, it's scary too. There are so many things we cannot fix, so many things we have to simply watch our boy go through. We love him and yet we cant "fix" him, no matter how much we want to. We cant take his pain and make it our own, we cant give him our eyes with which to see the world or our legs with which to walk. That just wasnt meant to be.

Seth has physical, occupational, feeding and speech therapies once a week. He rolls over both ways, claps, plays with toys. He laughs, babbles, responds to touch & the sound of our voices. He has perfect hearing - supersonic, we call it - and we are so thankful for that. We are working on getting him to sit up and to crawl, as well as eat solid foods. We have watched him gradually but continuously fall off the charts in weight....our once roly poly big guy is now quite skinny, he doesnt have any extra chub to spare anymore. But he's still beautiful. He's still precious. He still an amazing, wonderful gift from God.

God is bigger than CMV. He is bigger than seizures, CVI, kidney reflux. We know that with one wave of his mighty hand he could heal our baby. We pray that he would, but we know that God's plan for Seth's life is so much bigger than anything we could dream of. We are just thankful that he has seen fit to choose us for Seth...that we get to share our lives with this incredible boy.

"But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore, I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me".

~ 2 Corinthians 12:9