Thursday, October 3, 2013
October is eczema awareness month. It is also breast cancer month, Downs Syndrome month, microcephaly month, sensory processing month, dwarfism awareness month and probably many more.
While all of those are noble causes, our battle lies with eczema. There are thousands of kids who suffer with it. Some worse than others. Some can be controlled with over the counter medications, some get infected and require hospitalization and/or antibiotics, some look like sunburns, some look like patches of raised and excoriated skin.
Six and a half years ago if you would have told me that in 2013 Milo would be trach, vent, g-tube free and thriving in his main stream 1st grade classroom, but would have eczema, I would have been ecstatic! Now don't get me wrong, I am very grateful of how far he has come but there are days and weeks I would trade the eczema for having his trach. I know there are people gasping at the thought but let me explain. Eczema affect him every minute of every day. He is itchy and rashy. It makes him irritable and difficult to sleep. People are starting to look at him and shy away because they don't want to catch whatever it is that he has. The palms of his hurt and the bottom of his feet can have open sores which make it painful to walk. Honestly Milo's trach was less noticeable than his eczema, he rarely required suctioning, he could wear a cap or a Passe-Muir Valve that would allow him to talk. The trach did limit his ability to play in water and sand but that is about it.
In a few weeks we will be embarking on a new journey with National Jewish Health to help control Milo's eczema. The hope is that we can get his skin clear, learn how to keep it that way, and quickly control flair-ups that will inevitably happen. This day program is every day Monday-Friday for two weeks. The first night will be spent in the hospital and from then on we will be able to come home for the evenings and return first thing in the morning. Missing 10 days of school was a big consideration but I was able to schedule the time over his Fall Break so should only miss about 3 days of school. I have had mixed feelings about participating in the program and how effective it will be. At this point, we have nothing to loose and everything to gain.