As many of you know waylon was born with bladder exstrophy and hypospadias(his bladder was outside of his body and his urethra/penis didnt form properly)and underwent a 8hr surgery at just 22 1/2 hrs old to pur his bladder inside him and form a penis and belly button for him, upon doing so they had to break his pelvis in 2 spots). He was a fighter from the get go and continues to be just that . Since birth waylon has had a total of 4 surgeries with many more in his future . Even thru it all he continues to smile and bring joy to others unknowingly. On friday 10/16/2020 he was admitted to advent childrens hospital in orlando for what was supposed to be a 3 day stay for failure to thrive . Well upon our stay they realized just how serious it was as his weight continued to drop. A 3 day stay turned into a week and ongoing . On wenesday 10/21/2020 he went under for an upper endoscopy, in which they saw inflammation in his throat . They took a biopsy suspecting it to be E.OE and sent it off. Well we got confirmation that it was Thursday morning. Eosinophilic esophagitis (EoE) is a chronic immune system disease that has identical symptoms to GERD, like trouble swallowing and chest pain. It happens when white blood cells, called eosinophils, build up in your esophagus, the tube that connects your mouth to your stomach.These white blood cells are supposed to stay in your digestive tract. An allergic reaction usually makes the white blood cells move into the esophagus, which causes inflammation and discomfort. So we began to treat in Hope's it would help with his weight issue, as he has to gain and maintain weight to be able to do his next bladder surgery at 1yr old . They switched his formula and we are fighting with insurance to cover it as it's not covered on wic and is $60 a can!!! During this entire time mommy has been staying with waylon at the hospital, having to buy food and gas (there and back cost about $80) and daddy has been home trying to take care of our girls and furbabies. Mommy has missed an entire week of work and ongoing still and daddy was cut hours due to the rain (cant paint in the rain) so things are extremely tight. Anything and everything is greatly appreciated as we try to get his formula covered and just make ends meet. We had a facebook fundraiser but facebook decided to delete in saying it went against they're standards.little mr waylon wont let this stop him , we will get over this hurdle eventually and continue to be strong .
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Palm Bay, FL