Around the twentieth week of pregnancy, we were told by our doctors that Riley would be born with severe Hydrocephalus. Doctors seemed very unsure about what type of life Riley would have due to the diagnosis and at one point one firmly suggested we terminate the pregnancy (upon this recommendation we found a new doctor).Riley was born on July 26th, 2007 weighing 8lbs 6oz and was twenty one inches long. Riley was born full term at 39 weeks, and brought into our world by cesarean section due to the large circumference of her head. Also, the pressure in her brain was so great that she had suffered a small rupture in her brain and she needed to come out as soon as possible to avoid further damage.
One step at a time Riley has continued to surprise and defy her doctors expections and overflow her mommy and daddy\'s days with awe, motivation, inspiration and pride. Over the years in Riley\'s life she has been given many physical and mental roadblocks to overcome. Some she has soared over as though she has the wings of an eagle, others she still struggles with and some are too far out for her to even know she will one day face them. One thing is certain, this little girl has more determination and joy in her soul than most and these hurdles will remain just that, hurdles. They might slow her down but nothing will ever stop her.
As she came home from the hospital, we were required to carry her everywhere on a pillow because the extreme excess cerebrospinal fluid (CSF) in her brain made her head soft. We are not doctors and will not attempt to explain how hydrocephalus works in a medical descriptions but I will leave you with the actual dictionary definition: \"hy-dro-ceph-a-lus: an accumulation of serous fluid within the cranium, especially in infancy, due to obstruction of the movement of cerebrospinal fluid, often causing great enlargement of the head; water on the brain\". Without the pillow, it was feared our fingers might cause Riley great discomfort and even harm her brain. Months went by and her skull began to form which seemed to be good thing but doctors were concerned that her skull was not closing properly. After a few more months of careful observation by the team of doctors, we attempted a cranial helmet. The helmet was customized to Riley's head and was supposed to slowly mold her skull into the proper shape over time and allow her brain to have the room necessary to continue growing normally. Again months went by and many helmet revisions later it was determined that all options other than surgery had been exhausted, attempted and failed. We were informed on the risks and benefits of the surgery and were thoroughly informed that the surgery to reconstruct her skull would be lengthy and would require an extended amount of time at the hospital. After much prayer and conversation we decided it was what needed to happen to give Riley a chance. She went into surgery the morning of July 16, 2008. The surgery lasted four hours and shortly after waking, she was admitted to Primary Children\'s Medical Center for a week. Once Riley returned home she went through a long period of pain, pressure sores, nightmares and other horrors that no child should have to endure. Since that surgery, Riley has had one more surgery in November 2011, this time on her eyes. Luckily, she was able to heal from that surgery quickly without much pain or discomfort.
Riley is slowly learning to speak, she cannot walk, she cannot crawl, she cannot eat alone, she is not potty trained and she is required to take different medications to prevent her from having debilitating seizures that will leave her without movement in different limbs and facial features for hours at a time. While her medication is helpful, it does not render her seizure proof and she still has seizures at random hours of the day and night. With all of these hurdles in her life, she remains beaming with love to all that cross her way. From her pre-school teachers and aids to random people in the grocery store, Riley will always be quick to tell you "Hi" and that she "lubs you nutch.\" She is our angel and our inspiration.
After I had been in Afghanistan for about a month in 2008, I made a phone call home to my wife. I knew something was different about her but I couldn't yet put my finger on it. After several moments and her forcing guesses I finally got her to break the news... She was pregnant! We were full of emotion as we spoke over the phone. We were separated by thousands of miles of oceans, deserts, mountains and war. But in that moment we were side by side. We were both full of excitement and love but also full of anxiety and cautious optimism about our future child. I was far away at war unable to help her in the upcoming months and naturally she was constantly fearful about my well-being. She occupied her long days trying to take care of our special needs daughter, herself, the baby in her belly and she endured even longer nights tossing and turning while her mind was spinning a million miles an hour. \"Is Riley getting everything she needs to have the best shot a parent can give her? Is our soon-to-be baby going to be healthy and able to grow mentally and physically strong? Am I eating the right things to keep the baby strong?\" She was unsure but I am certain no woman could have done it better than her.
The only thing worse than being a single parent, raising a special needs child and being pregnant while your husband is overseas in harm's way, is being informed that the precious child you are carrying will soon come into the world with a very severe disability. The day after I knew my wife had gone to get some testing done for the baby, I got to a phone as soon as I could. As my wife answered the phone I could tell she was sad or something was bothering her. As she spoke the words, "something's wrong" my heart sank and felt like I was going to vomit. She began crying and I was trying to make it all out. I remember something about a neural tube defect, spina bifida, downs. It all went into my head and I froze up, for how long I'm unsure but I remember thinking, "please, we can handle one! But two?" Feeling more unsure of the situation than I sounded I tried to comfort her telling her that only time will tell for sure and panicking now does nothing to help the situation or fix it. I told her to remember the test is not 100 percent accurate and that for now we needed to just focus on our daughter and leave the rest to God. After we gathered our thoughts and were able to control our emotions we hung up. I remember falling straight to my knees praying that this was not true, that the tests were mixed up, looking for any excuse possible for it to not be correct and begging my Heavenly Father to send my child healthy. After about two months went by the situation only became worse. At the twenty-week ultrasound we not only found out we were having a boy, but that our little boy also had severe hydrocephalus. My wife was sent to a perinatologist that told her that my son needed to be removed from the womb about three weeks sooner than expected and that there was a possibility he may only live for 24 hours and if he lived longer than that he would most likely be blind, deaf, he would never speak, move, or eat on his own. No one said it but we both knew that if he made it through the first 24-48 hours of life the worst case scenario was our little boy would basically be a vegetable and he would not have a chance to ever run, sing, jump, fall over, or any other thing that children should be entitled to experience. To add insult to injury, my command in Afghanistan would not allow me to go home for his birth even though we had doctors recommendations stating their opinion that he would more than likely pass after a few hours of birth. My command decided that until he actually passed away, it was not an authorized reason for me to go on emergency leave. Through the courage of one Major and commander that I worked for, I made it home in time for our son Braxten's birth.
Braxten was born on January 2, 2009. He was born 8 lbs. 13 oz. and 21 inches tall. He was also born via cesarean section due to the circumference of his head which was 48 cm, 1 cm larger than Riley\'s. He was taken directly from the womb to the Neonatal Intensive Care Unit where he remained for approximately three weeks following birth. During his stay at PrimaryChildren\'s Medical Center NICU, he endured two separate surgeries both within the first few days of birth. His first surgery was for the placement of a Ventriculoperitoneal (VP) Shunt. A VP Shunt is a device that is placed in a ventricle of the brain and used to relieve increased pressure inside the skull due to excess Cerebral Spinal Fluid on the brain. A flexible tube connects to the VP Shunt in the brain and runs internally in his body down into his stomach cavity where the excess fluid can safely drain. Two days after Braxten had his shunt placed, he also had to have surgery to correct an imperforate anus. An imperforate anus is a defect that causes the opening of the anus to not line properly with the intestinal tract. The healing/recovery for this surgery seemed very long and sometimes we felt like horrible parents because he would be in such pain and there was nothing we could do. Fortunately, the surgery was a success and everything healed well. Unfortunately the procedure has left Braxten with severe constipation that on occasion requires medical assistance for him to complete a bowl movement.
While Braxten was in the hospital, he began having issues with supraventricular tachycardia which is basically an occasional extremely rapid heart rate. Luckily this is not generally life threatening but does cause extreme discomfort when the episodes are present. Just like his big sister, Braxten also suffers from random seizures but his always scare us a little bit more because he does not have your typical seizure. When Braxten has a seizure his eyes roll back in his head, his body turns a pale color of purple and blue and he will often vomit right before he stops breathing. Obviously when this happens we rescue breathe for our little man until paramedics arrive and can take over and get him to Primary Children\'s hospital. Those moments have been the scariest for me. To be breathing for your limp and lifeless boy looking at his blue face and feeling certain he has passed away but refusing to stop breathing until you are dragged away is a dark, scary, helpless, hopeless event for ANY parent to experience. Every time I have to do that it is a real reminder of how fast our little ones can be gone and just how precious they are. For now these are the only surgeries/conditions that our little ones have had to endure. We are very aware that they most likely see several more in the years ahead.
Braxten has progressed so much further than all of the doctors told us he would. He just turned three and is now able to crawl, slowly walk/wobble for short distances, he is able to make eye contact and smile, and he is able to make verbal cooing sounds and other baby gibberish. At this point he is having very serious sensitivity issues with his mouth and will not eat anything unless it comes from a bottle nipple. That leaves us with pediasure and all of its 4 flavors. We continue to try different things to encourage him to try and eat but our latest attempt included a popcorn seed sized drop of scrambled egg on the tip of his tongue and that made him vomit immediately!
Both of our children are slowly making progress but for us any progress is good. We know that we could greatly enhance their progression if we had more means for this to be accomplished. Due to my current job with the military I make enough money to provide for the basics for my family but not even close enough to buy them the things they need to give them an even shot at having a semi-normal and self sufficient life. I want terribly to be able to look back 50 years from now and KNOW that my wife and I did everything on earth to fight for our little ones and to even out the odds for them as they fight day to day to be \"normal\" and happy people. I would give them my own legs if it meant they would be able to run, I would give them my arms if it meant they would be able to climb a tree but unfortunately, I can't. If you're reading this it is my hope that you feel for a second that you know my two little heroes. I have tried to provide a description of them and their conditions so you know who it is you are supporting. If you are local and choose to donate even a dollar, I am more than happy to meet you face to face with my little girl and my little boy so I can look you in the eyes and thank you from the bottom of my heart. My wife and I are humbled by those who find it possible to donate to our children's future, their hopes and their goals.
With money donated we will buy walking devices for Riley that are specifically for the needs of her muscles and her leg structure. Not only will this help her walk but it will also help her develop muscles for standing, sitting and crawling as well. We will buy Braxten devices that will help him build his core muscles and allow him to learn how to balance with the ultimate goal of him running outside unassisted. Funding will also allow us to get both of them extra specialized therapy for their fine motor skills. Currently they struggle to pick up or manipulate an object using their thumb and pointer finger. This makes things like eating, playing with objects and being even slightly independent nearly impossible. Both children are struggling with balance and we just don't have the right equipment or time with professionals to address this as much as they need it. Funding would allow our two special kids to move into the fast lane (developmentally speaking) and use every ounce of their brain while they are still young and trying hard to learn. We do get some assistance through therapists at school but with the way our public school system is set up, it is simply not possible for our kids to get the amount of treatment they need at the quantity they need. We have applied for different resources but unfortunately our income places us in the "working poor" class. We make too much to qualify for most government assistance programs but not enough to afford our little ones extra needs without the assistance, a frustrating position to be in.
If you can donate we are so extremely grateful and in debt to you. As I said above it you donate and live in the area I would love to meet you and thank you for your generous and selfless donation. Please know that no donation is too small. If you can give fifty cents, that is fifty cents more towards giving our kids the life, the chance and the fun all children deserve. If you cannot afford to donate right now, don't feel guilty. Hopefully you have enjoyed learning about some of our children's medical conditions and walk away from your screen having learned something. And next time you see a disabled child in the grocery store, remember my children's story. Remember how uniquely powerful they are and give them a big smile, stare them in the eyes and say firmly "you are such a pretty/handsome little girl/boy.\" From a stranger, that sort of connection with either of my heroes is more of a donation than anything in your wallet and again we are humbled by your kindness. Thank you to all who have spent the time to read this, to all who have chosen to donate, and to those who wish they could donate but simply cannot right now. God Bless!
Shane, Dawny, Riley & Braxten
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