The Great Ezcema Battle

If you've known our family for any length of time, you know that we've been battling Eczema with Lucy for two years now.  In that time, we have seen her pediatrician and dermatologist numerous times (in fact, we have seen the physician's assistant at her dermatologist's office 4 times in the last month and a half and we go back again on the 1st).  At her last appointment, the dermatologist told me that "experts" (whoever they may be) say that the quality of life for families dealing with Eczema as severe as Lucy's is comparable to living with a child who has severe autism.  A year ago, I would have called him crazy.  Now, I kinda get what he means.  The past 6 months (the point at which things started getting really bad) have been exhausting.  I've read so many conflicting things, have spent so much money on different lotions, creams, and bath treatments, just trying to find something that works.  I worry constantly about overexposing Lucy to corticosteroids, and if she is becoming immune to their effects, or dependent on them. 

These are all prescriptions we've gotten since the beginning of May.  I kid you not.  Actually, there's one more.  I forgot she has a prescription now for Q-dryl, which I believe is a stronger form of Benedryl for her to take at night.  Thank goodness for health insurance, right?
Unfortunately, health insurance does not cover the cost of OTC moisturizers.  Of course the good ones are pretty expensive.  I am very happy with a new product Curel came out with; we've been using it for the past month and it is definitely the best OTC treatment we've used. 

This is their new Ceramide treatment.  Ceramide is supposed to be really good for your skin because it helps your skin heal itself.  We did use the Cera Ve which I liked too but the Curel kind has petrolatum in it, making it thicker.  I know petrolatum (think Vaseline) is really not that great when you think about what it is, but unfortunately, I have yet to find an "all natural" product that does as good a job.  The other plus to the Curel is it's about $4 cheaper than the Cera Ve and when you're buying at least one tub a month, it helps to try and save a bit of money.  Curel is in no way paying for me to endorse them (maybe I should work on that....) but I highly recommend this product for anyone who is dealing with really dry skin or Eczema. 
Anyway, the past few weeks we've been doing a treatment that I think is working pretty well.  It's called wet-wrapping.  Our dermatologist used it with patients when he interned at the Mayo Clinic.  Basically, we apply Lucy's steroid cream, then her moisturizer and wrap her up in towels that have been soaked in water and then wrung out.  Then she sits like that for 20-30 minutes.  To fully cover her arms, we use some old socks of Walker's.  We do this twice a day.  I'm glad it's summer and she actually has time to sit like that for an hour every day!

Here she is all wrapped up (with a waterproof sheet protector wrapped around her towel so the chair doesn't get soaked).  You can see her face looks pretty bad here (definitely not the worse it's been!) and so I want to ask how we can possibly do the same technique with her face.  I don't know if we'll have to continue the wet wrapping twice a day or if her derm. will want to bump it down to once a day.  I do know we will need to take a break from the steroid soon here.  She's been on a steroid cream for almost the last month straight.  It's really hard when we take her off them.  She immediately flares back up and is just miserable.  She scratches her neck and head in her sleep and her eyes are always puffy from rubbing them so much.  Lucy is such a happy little girl and it breaks my heart on those days when we can't do anything but lather her up in moisturizer and hope that it's enough. 
I've been praying for a long time that Lucy will outgrow this; I know many kids do.  I asked our derm. if he thought she would and all he would say is "it's possible."  He didn't look very hopeful though. 
And some days I get really down about all of this but I try to remind myself that there are others who have it much worse.  I have found incredible support on the National Eczema Association's website.  They have a lot of information and a forum where people share their stories and things that have worked (or didn't work) for them.
I'm not really sure the point of this post; maybe I'm trying to share some information, support for others who are going through this, or maybe I'm just needing to vent a little. 
I don't really know what everything will look like in the future; I guess I'm just hopeful that no matter what, Lucy is happy and that she will have the strength to deal with this no matter how bad it gets.

Potty Training

To be honest, I've been thinking about potty training for at least a year.  I knew we had to get Taylor trained but I kept putting it off.  I wanted to make sure she was "ready" (which I'll say more about this in a minute), I wasn't sure she would do it because of her language delay, but mostly I was afraid of being a failure.  Potty training scared me.  I read so many different blog posts on potty training in a week, potty training in 3 days, and even potty train in 1 day!  Yep, ONE day.  I even had that one pinned on Pinterest (I don't anymore).  Over the past year, we've kinda half-hardheartedly tried with Taylor.  We'd put her in undies, or have her wear her cloth trainers.  She spent much of the last school year in Pull-ups.  Our daycare provider was great in that she would put Taylor on the potty every day.  But, Taylor hardly ever did anything.  I figured she just wasn't ready. 
But as the school year ended, I knew it had to get done.  I was NOT sending her to pre-school in the fall in diapers or Pull-ups.  I knew I could (it's a public program so they don't require kids to be potty trained), but I was tired of the diapers and really, when all of her friends have been potty trained for at least a year, it was a little ridiculous that she wasn't.
We started last Saturday.  I didn't really know what to do other than some things I've picked up from random books, articles, blogs, forums, and friends.  I knew we had to say good-bye to diapers for good.  So I took off her overnight diaper and said "okay Taylor, no more diapers."  And then I let her run around naked the whole day.  About halfway through the day, I knew I needed guidance.  I needed help.  I really didn't know how to do this!  I'd read about an e-book called "Oh Crap.  Potty Training."  It sounded pretty good and it was only $15.  I figured it'd be worth it. 
The first thing I read about was the "readiness" part.  The author, Jamie Glowacki, said not to think of it as "ready," but more as "capable."   Wow, when I thought of it that way, it really hit home.  Taylor has been capable for ummm a long time now.  We had to make this work.
The other thing I really like about Jamie's book is she doesn't give you a time-frame.  Instead of saying, Day 1  you do this and Day 2 you do this, and expect this by Day 3, she gives you blocks.  Four of them to be specific.  And each child moves through the 4 blocks at his/her own pace.  Some kids go through all four in 3-7 days.  Some kids take longer.  When I read that, it was like "whew! pressure off!"  That's what made me so nervous about those 1 and 3 day programs.  What if it didn't work in 1 day or 3 days?  Then I give up?  I would feel like a failure for not getting it done in the time frame the author(s) tell you it should happen. 
I don't want to just make this all about the book though.  I will just say that if you are going to be potty training a kid in the near future (and I wouldn't wait to do it- Jamie recommends between 20 and 30 months) I really really recommend you download her book.  You don't have to use rewards (in fact she discourages rewards because why reward the kid for something they are expected to do) and her tone in the book is very no-nonsense but in a kind, funny way.  Oh, she does use the f word a few times, and maybe some other swear words.  That doesn't bother me, but I felt like I should warn just in case it bothers others.
Anyway, the point of all this (hmmm I really digressed there) is we started on Saturday which would make today Day 8.  I'm not going to lie- the first day was confusing (remember I read Jamie's book kinda late in the day so we didn't really start doing her method until about 3 in the afternoon).  Day 2 was awful.  But I didn't give up; we were NOT going back to diapers.  Day 3 was better.  Day 4 was better than Day 3.  Day 5 was simply fantastic.  Day 6 was more on par with Day 3.  Day 7 was good, and today?  Well today has been pretty great.  I'm not going to go into specifics as to how many times Taylor has gone on the potty because honestly, I think that's annoying when people do that. Especially on Facebook.  Like, you don't share your own bathroom habits on Facebook, so why are you sharing your child's?  Let your child have some dignity (okay stepping off soapbox on that one).
Oh...night training.  Yeah we actually are tackling this now too.  I just figured it'd be easier to get it all out of the way.  So right now, Taylor sleeps on just her mattress (I know it sounds awful but she doesn't seem to mind) and her pillow has plastic bags on it under the pillowcase.  She does have her blanket of course and we have extra ones near her bed in case we have to change it out in the middle of the night.  She's only had 2 nights that were completely dry.  But after last night I think I've nailed down when we need to wake her up to pee so we'll see if I'm right tonight.  What is helping is we really cut down on her fluids in the evening.  At dinner she has a small cup of milk (this gives her practice drinking out of a regular cup as well) and then that's it for the night.  If she's really asking for a drink (like she did last night) we'll give her a tiny amount of water.  This may sound cruel but we try and push the fluids early in the day so that she's not as thirsty at night.  Really, toddlers only need about 1 liter of fluid every day. 
So is Taylor fully potty trained?  Well yeah I'd say for the most part she is.  She is starting to self-initiate her bathroom breaks but if I know it's been awhile I will prompt her.  And when I say prompt I mean "c'mon Taylor it's time to pee," not "do you have to pee?"  I know if I ASK, the answer will always be no.  Naysayers might say "well then Taylor's not trained, you are!"  Um, no.  Taylor knows where her pee and poop needs to go.  That is the point of potty training.  You are not teaching your child HOW to pee and poop; they are experts at that.  They've been doing that since birth!  You are just teaching them a new place for pee and poop to go (another aha! moment from Jamie's book).  So yes, I'm prompting her but you know if you think about it, we're always prompting our kids.  "You need to wash your hands before dinner," "look before you cross the street," "get your homework done before you watch TV," etc.  We will be prompting our kids until they are in college.  And I bet it won't even end there.  So I am boldly saying that Taylor is potty trained. 
And after we go to NC in a few weeks, we get to go through the whole process again with Lucy.  This will be quite the productive summer for us. ;)