TSW: Week 2

This last week we stopped the Protopic completely.  We had put some on Lucy last Sunday morning and I didn't apply any on Sunday night because her skin looked pretty good.  We didn't do any on Monday either for the same reason.  And we just kinda decided that maybe she didn't need it anymore.  Lucy's skin seems to be cycling.  And I know this is common in TSW but from what I've read, other people seem to have a longer cycle maybe?  With Lucy, her skin will be suuuuper dry and flaky.  Her skin will feel like very thin paper.  It's like this for a day or two, then she'll go through this massive skin shed (seriously, her car seat is pretty gross) and the skin underneath will feel smoother and healthier.  And then it starts all over again.  So on Friday her skin felt almost supple even, but I noticed on Saturday it felt a little bit drier and then this morning it felt even more dry.  And this morning I could see the backs of her knees starting to get dark red lines so I'm sure they will be cracking soon.
We've still been using a variety of things.  In the morning we've been putting on moisturizer; we were using the Curel but we ran out so right now we're using the Aveeno oatmeal and ceramide formula (it's okay; not as nice as the Curel ceramide treatment).  Then over that we've been using the stuff I found at Dollar General that has the petrolatum, coconut oil, etc.  Usually before her nap, she gets lathered up again in some sort of moisturizer or Aquaphor.  Then after her evening bath, we use the Medicine Mama's Bee Magic and coat that with either Vaseline or the Dollar General stuff.  I do use the Bee Magic on her face twice a day because I feel it moisturizes really well.  If it wasn't so expensive I'd be putting it on her all the time!
We did find out earlier this week that the culture her dermatologist did on her scalp at the end of July came back positive for MRSA.  That sounds scary right?  It's just bacteria that is resistant to common antibiotics.  So she's on an oral antibiotic right now.  I don't really know about this since her scalp has been looking so much better and there is definitely not as much open or oozing skin as there was.  So I don't know if the MRSA was already gone by the time they called us??  I don't really know how all that works so we're doing the antibiotics just in case.
Lucy is still sleeping so well.  I really feel so blessed for that.  I know she itches in her sleep a little bit because her hair is always messed up and the sleeves of her PJs are always pushed up in the morning but I also know she's not scratching the whole night.  I think she must do it when she's in the lighter stages of sleep.
Her gluten/dairy free diet is still going pretty well.  Although I guess she kind of "cheated" twice this week.  One night, she and Taylor were eating dinner at their play table and Taylor got up to use the restroom.  Well Lucy decided to help herself to some of Taylor's chicken nuggets which of course have wheat.  And then yesterday Lucy came to school with me and I thought I had brought plenty of snacks for her (box of raisins, 2 pouches fruit snacks, and 1 mashed fruit/veggie pouch) but even after eating all that Lucy informed me she was very very hungry and all I had was a package of Goldfish crackers.  I don't think she was really bothered by it but today she did have some very loose poop so maybe it just affected her tummy and not her skin.
I guess I'm still just waiting for it to get worse.  So far, everything seems to be going well despite Lucy being so itchy.  She's not even as itchy as she was the first few days.  I don't know if her addiction is just not as bad as other people's or maybe all the things we're doing (baths 2 times a day, multiple moisturizers/skin protectants, and the diet) are just really helping her but I'm very grateful that so far this hasn't been too terrible.  I mean, it hasn't been that much worse than when she was on steroids.
I took this picture yesterday morning; her skin looks pretty good but it actually felt a little dry/rough and as you can see, she's still itchy

Oh and yes, she is wearing a diaper.  I can't remember if I mentioned last week how she has regressed a little with the potty training.  Some days she's done really well telling us every time she has to go (even when wearing a diaper) and other days she just goes.  We always give her a choice of what to wear in the morning and sometimes she picks undies and sometimes she picks diapers.  I'm not too concerned about it; if we have to retrain her in a few months, it won't be a big deal.