There are a few important thing for us to take into account in Ethan’s daily care, any small amount of friction on his skin will cause the poorly joint skin to split resulting in a blister, any blister that do form need to be popped immediately to prevent spreading. Any adhesives stuck to the skin will result in the tearing of skin off the tissue, neglecting the spread of bacteria will cause infection, malnutrition leads to slow development and a weakened immune system. Ethan only ever briefly wears clothes for special occasions. Just long enough to snap a photo in our effort to create some type of memories. Even then, he has four layers of gauzes on his skin that range inside to out from lathered in a thick layer of Aquaphor (the main healing ointment for his skin) to a relatively dry exterior. The layer that makes contact with the raw skin is an Aquaphor coated strip of either Mepitel or Mepilex. Gauzes of this material are priced at about $7.70 for one sheet of 3×4 inches. but are essential in ensuring that the skin will not be ripped off the tissue when removing a gauze that has dried out of Aquaphor. The second layer is a heavily coated strip of Vaseline Gauze. The third layer is a moderately coated layer of cotton cause. The fourth layer is a Aquaphor insulated tubular netting gauze that holds the structure of the other gauzes into place. We invest a significant amount of time on wrapping his hands to strive to keep their full dexterity. Roughly two hours of preparation and one hour administering the gauzes. Strips of vaseline gauze are placed in between each finger to prevent any joining of he fingers. Each finger is then wrapped individually with all 3 layers of gauzes and lightly pulled toward the back of the hand the secured with the gauze in an upright extended position to retain full mobility in the fingers. Ethan is kept on specially prepared diapers that have all elastic removed and are layered with a thick coat of Aquaphor. Ethan is then placed on a specially prepared 23×23 in. blue medical chuck moderately layered with Aquaphor. Ethan’s exposed skin is covered in Aquaphor, more so in raw areas. Finally, Ethan is swaddled in a 100% cotton baby blanket. To prevent the spread of bacteria, we remain in our home as much as possible with an extremely limited number of visitors. Sterile needles are used to pop blisters. All surfaces are constantly disinfected. Scissors and other supplies are constantly disinfected. Gloves are used and disposed of after removing the gauze off of each extremity. Gloves are used and disposed of after every diaper change. Cetaphil cleanser is used in every diaper change. If a gauze is tainted by a small amount bodily fluids or stool than it is replaced. New gloves are always used when placing Aquaphor directly on his skin. Ethan uses a Dr. Brown Bottle with a special blue valve that allows formula to come out with just a light touch of the nipple. Even his bottle’s nipple need to be lightly coated with Aquaphor. At day’s end Ethan will have utilized three and a half 14g Aquaphor tubs ($56), two 3×4 Mepitel sheets ($15.40), 10 medical blue chucks ($1.50), vaseline, cotton and tubular netting gauzes ($5.00 after insurance coverage). His medical supplies are roughly $77.90 a day and over 2,300 in a month. Our finantial inability to buy Aquaphor online in bulk has lead us to clean out every Target and Walmart of 14g tubs of Aquaphor in the city of Stockton Ca. Last night I had to empty out the Target in Lodi Ca. We are desperate to raise the funds to buy a decent amount of medical supplies before our savings are exhausted to their entirety. If you are interested in watching our strategies in maintaining Ethan’s skin I would like to inform you that I will be posting videos on how we bandage his hands and legs on Saturday. I will also be posting videos on how we prepare his diapers and medical blue chucks.