From far away, Elijah seems like a normal baby, but as you get a closer look, you will notice the scars, blisters, and open wounds on his body. Before he was even a year old, he was missing most of his finger and toe nails. His mouth and body blister, and his skin peels off from friction. Elijah has Dystrophic Epidermolysis Bullosa.
His daily struggles change based on the condition of his body. If his body is having a good day, generally so does he, and vice versa. Although he has learned how to eat from a spoon, crawl, sit, pull himself up, and walk – normal milestones for any child – we encountered several issues with just these few. For example, we have to make sure that his spoon is soft enough to not hurt his tongue and that the food we are trying won’t sting any wounds in his mouth. Every day, we face the risks and consequences of him falling over and getting hurt on something around the house, even the soft carpet. He’s learning to run, but most shoe options don’t work for him; his toes or the tops of his feet always blister, so he has to be carried or in his stroller if we go out.
We have to do so many things differently with Eli than other parents do with their babies. He cannot be in daycare since the risk of injury and infection is too great, so one of us must be home at all times. His clothes have to be very soft and just a little bigger than his size to reduce friction on his body. We have to use specialty feeder bottles for babies born with cleft lip and remember to put Vaseline on them to reduce friction in his mouth. These changes have helped him eat almost like a normal baby, but he has still struggled with gaining weight since day one. His EB nutritionists gave us the highest calorie mix of formula with a special powder to try to boost his weight and now he’s on Pediasure supplements, yet Eli is still under average weight for his age.
As crazy as that all may sound, it’s normal to us now. The biggest “wow” factor of having an EB baby, and something that we will probably never grow used to, is the bandage changes that we do for Eli every other night. We take off all of his wraps, pop any blisters we find, and give him a bath with Epsom salt and bleach, since we cannot use soap on his open wounds, before rewrapping him. This helps prevent infections and keep him clean. After his baths (which he always loves!), is when the reality sets in. His bandage changes can either be quick and easy, or he can scream and try to get away the entire time. Most of the supplies we need are special orders from a medical supply company, but with insurance changes, the companies change too. For the most part, bandage changes seem to be getting easier for Eli as he gets older, but when he has a bad area, he is (rightfully) upset the entire time. The whole process can take anywhere from 30 minutes to 2 hours, all depending on Eli and his body's condition. After his changes, he settles into his bouncer with a bottle and his favorite movie, Trolls, to help him calm down for bed.
This is nowhere near as in-depth as things really are in our house, just merely a quick glimpse into the life of a butterfly parent. But, despite the constant daily pain he is in, Eli is such a happy and loving little boy. His smile and laughter make every bad, horrible day worth it. He is beyond strong, and he has already taught us and his community so much in his short life.
- Jaycee, Elijah's Mom