Memorial Day 2014

Today was a pretty good day in spite of the way it started. We got to meet my sister & her family at the zoo, and I am glad Katie was feeling well enough to go. We had a wonderful time, although I am super exhausted after only having about two hours of sleep last night.

This evening I helped Katie take a bath, and as anyone who has ever had raw skin after an itchfest knows, the water can be pretty painful. I coated all the areas she was concerned about with Vaseline first, and kept it nearby for any other burning areas that popped up. I bought a new bar of soap for her at Whole Foods today and the ingredients list seems pretty good. We used it tonight with pretty good results as far as we can tell.















Katie's leg is kind of red tonight, probably a manifestation of why TSW is also known as "red skin syndrome."








Here is our nightly arsenal that she seems to like & find helpful. Sorry the pic is upside down.








We coat her arms & legs in a thick layer of Vaseline, then wrap in gauze & tape it on. Then we take the tubular mesh & cover it so it helps it stay on. She has also been enjoying wearing her footy pajamas lately.
Here is the rest of her arsenal. It includes zinc oxide, witch hazel, 3 types of sunscreen, probiotic, zinc, omega-3, glycerin, grape seed oil, vitamin e oil, lavender essential oil, Dead Sea salts, Shea moisture body oil, Shea moisture body lotion, shea butter, coconut oil, and cocoa butter. I have a few homemade things we want to try to make & I will post about that here when we do.
I did want to add that of course we aren't using everything in that box yet, we just bought some of it at Whole Foods and Walgreens to try them out a little at a time until we find what works best for her skin.







This picture is from a few nights ago, but this is what Katie looks like after she is doctored up for the night (minus the tubular stretch gauze which we didn't have at the time).








I hate apps that crash when you are in the middle of typing something. I just lost half of this post. :(
Anyway, I was saying for those of you who love Katie and maybe are concerned over whether we are doing what is best for her, please be assured that we as her parents are very educated & definitely do not undertake this lightly. We love her more than life itself & only want what is best for her.
Please do not judge her or her progress by what you may see on a day or two here & there. This journey is very much a path of two steps forward & one step back, and even though there will definitely be flares & setbacks, overall we are moving forward in a positive direction. We (all of us, including Katie) believe from our own research & the experiences of so many who have traveled this path before us, that it will be worth it and that this is the only path that leads to true healing from topical steroid addiction.

For those of who also love her & are around her daily, we can see the day-to-day victories & improvements to her skin so much more clearly (again, no pun intended).

About a week into TSW, her face was so tight it was painful. This is also when her ear started hurting. Interestingly enough, a few other who have been down this path also noted that they had ear pain early in their journey. We did attribute hers to an ear infection though as she was so feverish.




After a night of keeping a wet rag on her face, she awoke to peeling skin galore the next morning This is also common & normal for TSW sufferers.



By that evening, all of that loose skin was gone & her skin was mostly smooth except around here forehead & lips (areas she keeps picking at).




This was about a week later.





This is today. Her forehead is noticeably smoother than it has been for a long time.




Please ignore the background mess in all our pictures. Going through this is very tiring and time-consuming, so we must take care of more important things first.  Please pray for a good night's sleep for all of us with minimal itching.
Thanks so much if you made it to the end of this book.
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