Things obviously happen for a reason. Evan fought and thrived through his NICU days and continues to thrive in his own way. Though, the help he has been given from his Mommy and Daddy are helping to contribute to his success (not to talk myself up or anything ;-p). Joe and I work very hard on skin care. We have been consistent with our routine and Evan has been cooperating, for the most part. We have been very, very, very lucky that he has not gotten a skin infection (knock on wood) and has only had two mild eye infections. Evan still tolerates the 40-60 minute baths with exception to exfoliation of his hands or feet. He will relax for the most part, play with a toy, splash his feet and hands, giggle, babble or sign along to songs. Once the hands are scrubbed he will fuss, whine or even scream. And once you let his hand go, he smiles and goes back to what he was doing. He'll react the same way when we scrub his feet. His hands and feet are very scaly (very scaly to me, is when I struggle to get it off since it is thicker than card stock). Not being able to properly exfoliate his hands or feet due to his intolerance allows for quick build up. We have been using Tazorac (topical skin retinoid which helps breakdown scale) on his palms and feet a few times a week when necessary.
Before a bath & not even that scaly
During a bath splashing away
We use A LOT of Aquaphor (healing ointment). We are fortunate that the company supplies us with 50% of what we use. It is amazing that this company helps those with Ichthyosis by providing a case every three months (read more about that here). When Evan was little, it was enough but now we will go through at least two cases every three months, which averages out to at least 2 jars a week. I can't imagine having to pay for all of that ourselves. Having that reliance from this company is a major relief. I use a lot of Aquaphor because it is the only thing that keeps his skin moist. If Evan's skin is left dry it could easily break, rip or tear leaving him susceptible to infection. Lotions are not effective for Evan. Seconds after putting it on was as if you never put anything on his skin. He sucks it up like a sponge and then its gone. So things are pretty sticky around here! Evan obviously likes the Aquaphor since he acts like goof ball during applications and diaper changes. It makes a mess and is hard to clean up but it is helping to keep my son alive so I can deal with the greasy clothes, toys, blankets and smudges around the house. But it will be interesting once he is motor!
After a bath chillin' out
Being home with Evan has been a huge benefit for both of us. I am fortunate to be able to take care of Evan, participate in all of his therapies and be in control of his skin care and feedings. I feel most comfortable being responsible for his complete care. In less than a year he will be headed to preschool where he will receive his therapies. This stresses me out beyond belief. I know I will eventually have to let go and let someone else care for him. I just hope that when we make that step towards preschool he will be communicating better and will be moving around more on his own. We have a lot of goals to reach and achieve in the next 10 months and I am optimistic that we will succeed.