Tried to publish this as a note, but it wont allow me to copy and - TopicsExpress



          

Tried to publish this as a note, but it wont allow me to copy and paste it. I need some people to read over it, and let me know what you think. Edit suggestions, etc. Im hoping they will publish the entire thing or I might offer to pay for them to do it along with a before and after picture of Ty. But its been one month, I wanted to be sure before I sent this to the paper. So here it is, please give me edit suggestions. Dear Cleveland, I want to say thank you to so many people & businesses that this seems the best way to do that. So many of you helped me by raising or donating money for my almost 17 year old son Ty Barnett to have his fourth craniosynostosis surgery in Dallas, TX. We had less than 4 weeks to raise $7,000 plus expenses. So many of you stepped up and helped us. Cleveland area helped raise a total of $3480.00 for my sons surgery. Many of you dont know Ty or even what craniosynostosis is, but you helped anyway. I want to give (as briefly as possible) a description of craniosynostosis and Tys history as well. Craniosynostosis is a condition where an infants soft spots close prematurely. Those soft spots are actually called sutures. There are 4 cranial sutures, not just the one you feel or see on a babys head. They are: Metopic (forehead area), Coronal (from one side to the other just in front of the ears), Sagittal (down the center of the skull), Lambdoid (across the back of your entire skull). Coronal & Lambdoid actually have 2 each, bringing the grand total to 6. Some of these close during the first year of life, others dont completely close until someone is in their 20s. Craniosynostosis comes in many forms & syndromes, some are genetic, others are nonsyndromic, some medications have been linked to causing it and some have no explanantion at all. Left untreated, any form of craniosynostosis causes an increase of intracranial pressure (ICP). That then leads to visual impairment, sleep apnea, eating difficulties or impairment of mental development. It also causes severe facial deformities, abnormal head shape, and the inability for the brain to grow and develop. It can cause death if severe enough. Craniosynostosis can happen to anyone, and happens in 1 out of every 2,000 births. In Tys case, his pregnancy was normal, he was a planned c-section baby and was diagnosed within an hour of his birth. He was life-flighted from Cushing hospital to OKC when he was 3 days old. Ty had the most severe case (at that time) they had seen. Ty was born with all his sutures fused shut and he was completely missing the Coronal suture. His skull was abnormal shaped even at birth. The team had to wait until he was big enough (he had to weigh 18 lbs.) before they could do the surgery. He was exactly 4 months old. On 12-12-1997 my son went through a massive reconstructive surgery that lasted over 6 hours. He had 4 units of blood & 3 units of plasma. A full body blood transfusion. They had given us 50/50 odds of him even surviving the surgery. A week later, we came home from the hospital. Since we had to wait 4 months for them to do his surgery, Ty suffered lifelong problems from the wait. He is legally blind without his glasses from permenant damage to his optical nerve. He also suffers from mental retardation with an I.Q. of 61. He has speech problems also, and has required occupational, physical and speech therapy 16 of his 17 years of life. But he was alive. Thats all that mattered. Ty was labelled developmentally delayed from the time he was 3 months old. Being stuck with that label made things harder on us. Ty doesnt feel pain. To such an extreme that a fall of the monkey bars resulted in a break of both bones in his arm. He thought it was funny that his arm flopped. This is important because it comes into play later on. Ty was almost 13 when he finally received the diagnosis of Autism. Since then, our life has been much easier. In November of 2011, Ty started complaining of headaches and by the next day he was vomiting. Since his doctor knows his entire history, she wasted no time sending us to Childrens Hospital in Tulsa. He had no fever, just a severe headache & vomiting. The neurologist there immediately thought to check his skull. Ty had extremely high intracranial pressure. He had been having seizures for a few years that were continously getting worse. They thought he had epilepsy. They discovered Ty to have an ICP level of 45. That is life threatening. Since Ty doesnt feel pain, he didnt notice the headaches the way most people would have. So he was at a very dangerous stage by the time this happened. They released some of the pressure by withdrawing spinal fluid from a spinal tap and we went back to OKC to a new surgeon. His surgeon from 1997 had since retired. Ty had his second craniosynostosis surgery in April 2012 where the surgeon tried using a spring assisted device to spread his skull open and wait for new bone to grow. It didnt work. In September 2012 Ty had his third craniosynostosis surgery and it was a full reconstruction for 4 fused sutures. He required 2 units of blood, healed up and we came home. All seizure activity had stopped. Ty started having seizures again about a year ago. Mild at first, then he started complaining of headaches in February. I shaved his hair off to look at his skull. We were right in the middle of that ObamaCare change over and he was without insurance. He was approved for insurance on April 23, I made an appointment with his OKC surgeon the next day for May 8. The surgeon didnt even seem interested in Tys case. He was more disappointed in what Tys scar looked like than the neurological issues we were seeing. He offered to do something called fat grafting and sent us on our way. Something didnt feel right to me so I sought out second opinions. I sent Tys case to five other craniosynostosis surgeons all over the United States. All 5 surgeons wanted him to have another surgery based off his scans, history and the pictures I sent them. On May 28 we met with a surgeon in Texas. Dallas is out of network for Tys insurance but there isnt any surgeons that are in network. He also came highly recommended. We spent an hour with this doctor. He went over every CT scan, MRI and x-ray Ty had since 2007. He felt surgery was needed immediately. Surgery was scheduled for July 7th and we had less than 4 weeks to come up with the booking fee and multiple other down payments, co-pays, deposits, etc. Thats when I asked for help. On a wing and a lot of prayers, we made the deadline to have the amounts paid. By the time Ty had this surgery he couldnt hardly leave his bed. He was having seizures, severe uncontrollable headaches, his speech was slurred, he slept almost all the time. He was hateful, rude and snappy. Completely different from the sweet man-child he is. Tys fourth craniosynostosis surgery happened on July 7, 2014. It was just over 4 hours long. He required NO blood transfusion because in Dallas they use a blood recycling machine and Tys own blood is given back to him. His recovery time was shorter. Ty is almost 17 years old. They corrected 4 sutures (again) and used synthetic material to widen his skull. Ive waited so long to write this because I wanted to be sure. Ty hasnt had a single seizure since his surgery. He has NO headaches, is in no pain and his speech is improving every single day. He is active (well as active as he is allowed to be until his skull finishes healing completely), happy, loving, sweet and friendly. He is the Ty I KNOW and havent seen much of since early 2011. If I had waited until I could have raised the money myself, he probably wouldnt have lasted that long. His ICP level was a 40 this time. A craniosynostosis patient should never have an ICP level over 12-15 ever. I have my son back. I only asked for help for the before cost, just help to get him in the door. Tys surgery cost $114, 252.07, of which I am responsible for $55,191.56. If this town hadnt helped me, I would be burying my son, not making payments on his surgery bills. It will take me years to pay off his surgery bills, but every single penny will be worth it. I want to say thank you directly to a few local businesses that gave up their counter space, and in some cases putting their own tip money in our jars, along with a few of Clevelands citizens that arent related to Ty or even necessarily close to our family. They just did an outstanding job of reaching out and helping this Momma and her child in our hour of need. There isnt words to express my gratitude enough. Thank you doesnt even touch what I feel. I hope you all KNOW you have helped save my sons life. You are the people I owe everything to. This is why I live in a small town. This is why I live in Cleveland, OK. There isnt anywhere else like this in the world. Thank you for giving me my son back. I will spend the rest of my life trying to pay it forward. With much love and gratitude, Shawna Spoonemore With special thanks to: Brandi Ball (for her unexpected story in the paper, it really helped!!) Amber Belmer Maxwell Brandi Morris Smith Beverly Kinman F.D. Curtis Levi Owen In N Out #3 In N Out #4 Hickory House Dari Diner Diannes Package Store Classic Country Coffee Cleveland Lounge Bliss Bakery DJs Liquor Store RDJs (Terlton) Javiers (Hominy) Rosas Cantina (Hominy) Jonis (Sand Springs) And the citizens of Cleveland & everyone that donated. Thank you.
Posted on: Fri, 08 Aug 2014 02:46:56 +0000

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