The week before Lucy went through her worst flare (and I know more is coming). We've cut down on her baths (hello water bill!) and instead have gone back to doing wet-wraps. Obviously we don't put the steroid cream on her when we wrap her up but we do put on Bee Magic. Lucy likes being wrapped up, despite her protests when I take out the towel and water-proof pad. Even though we're doing the wet wraps twice a day and lathering her up with heavy duty moisturizers and vaseline, her skin is still dry and leather-like. I'm pretty sure this is just all part of the process; many people on the ITSAN forum complain about having "elephant" skin in different places and I see that on Lucy too. The skin around her butt is thick, droopy, and just plain weird. Sorry to be graphic but it's kinda hard to describe otherwise.
For the most part Lucy is still sleeping well. She now wakes during the night more frequently than she used to but she goes back to sleep pretty quickly. And she might not even be waking all the way up- just enough to let out a few whines and then she's back down.
While this has been a difficult first month, there have been some great blessings along the way. I mean the fact that when our dermatologist scheduled an appointment for us at Lurie Children's Hospital and it just happens to be the Monday after I'll be up in the suburbs anyway is pretty great. Also, my best friend generously sent us 3 tubs of Bee Magic so now we don't have to be as stingy with the application. And another friend who sells Norwex, gave us a Norwex body towel which really helps remove dead skin. Another blessing was when I was looking for an air purifier for Lucy's room, a friend said she had one in her garage that I could have for $5 and it's just the size we needed. Lastly, our daycare provider has been a huge blessing for us this year- she has been so patient with us and Lucy so far. She has been very supportive of our decision to end the steroids and she never acts like Lucy is a burden, even though I know she can be difficult sometimes.
And I know we have so many people praying for her too; I appreciate that so much. I might write an update after we see the pediatric derm. but otherwise I'll wait until we're done with 2 months.
|TSW is exhausting for everyone|