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Jun 12, 2017 Latest post:
Sep 26, 2017
My name is Ethan Blackmon and I want to welcome you to my Caring Bridge Website. My family have chosen to use this to keep all of my family and friends updated on me. I turned four years old on April 9th, 2017. I have been hospitalized approximately 200 times since birth. I live with my mom and my grandmother (Gigi). I am blind, non-verbal and non-mobile. I was born with several disorders including: a rare disorder Septo-optic dysplasia which affects my vision (doctors are unsure what I can see so I am legally blind) and Pano-hypothyroidism which affects the thyroid part of my brain and body (I am currently on daily thyroid medicine, growth hormone injections and hydrocortisone). When I was two years old I had a bowel obstruction and had surgery where a G-tube and Nissan was placed to help with my nutrition. I was down to 16.5 pounds at two years old. When I was a little over two years old I began having seizures and was diagnosed with Lenox-Gastaut syndrome which is atonic type seizures and a lot of times the seizures are irretractable. I also have diabetes insipidus that I was diagnosed with approximately a year ago which causes my sodium levels to go very high uncontrollably. I am on a very strict diet in which my intake and output is critical. My family weighs my diapers after each elimination. My family works hard to keep my sodium levels within normal range by staying in contact with my doctors often concerning any medication adjustments. I go to the hospital sometimes three times a week to have labs drawn to check my sodium levels. My family has a board that they keep on the refrigerator at home to check off how much I have gotten for that day as well as a log that they file in a book to carry to all doctor appointments to show them how many seizures I had each day, how much I urinated as well as my bowel movements because all of this is important in my treatment. This really helps the doctors to know how the medicines have helped me as it has taken a lot of adjustments. Before my seizures started I could sit up on my own for a short period of time and would try to stand by holding onto things. I lost all of my abilities when my seizures started. I am currently on two seizures medicines, one vitamin, one probiotic, two thyroid medicine and one growth hormone injection. My nutrition is given to me thru my G-tube I have several scheduled feedings daily. I also do have a bottle that I drink pleasure water with but after a recent swallow study I don’t get that as often as I was. I also recently haven’t been able to get the pleasure foods (baby food- bananas is my favorite) that I once was able to get due to my swallowing delays. I got my first equipment around the end of January 2017, when the equipment company brought the equipment out the equipment was not helpful because it took almost a year after measurements and I had already outgrown the equipment. I currently have a bath chair that has been hard for my family to use because we have a very small bathroom. My family is working now to try to get me approved for some additional equipment because the bones in my body are not developing properly because the items we are having to use don’t provide the proper support needed. I am in desperate need for a car seat and a wheel chair. I am currently 42 inches long and weigh 48 pounds. It is hard for my family to lift me into the tub and also our vehicle. I am transported in a Jeep stroller that my body is just to long for and my legs hang off the end and it doesn’t provide the support needed. My car seat is very bulky for our vehicle and it offers no head support and I have no head control. I have an amazing support group that believes in me and believes that one day I will regain the things that I have lost. My family always prays with me each day and they trust and know that God has me in his hands as I have proven a lot of doctors wrong with the strong will power that I have. Any help that you could provide my family with to make their care for me easier will be greatly appreciated as I see how tired somedays they are but no matter what they never give up on me. Thank you for visiting. Love Ethan