I (Heart) My Blender

If you had told me when we first decided to start a family that I would someday have a blender devoted solely to making lotion, I would have looked at you the way you just looked at me.  In all of my obsessive list making, "blender" just didn't seem an appropriate baby item. 

Not that there aren't days when a Papaya and Passion-fruit Rum Cocktail wouldn't top things off nicely...

My list of baby basics now includes a blender because Moonpie was born with Lamellar Ichthyosis, lovingly called "L.I." by the cool kids, namely me and the one in two hundred thousand people (1:200,000) born with this skin condition.  To illustrate for you how very rare L.I. is, it is estimated that there are twenty children a year born with her condition in the U.S. (we gained a person after the last census.  Go us!). 

Ichthyosis causes Moonpie's skin to shed at a faster rate than normal skin, forming clumps which resemble fish scales.

These scales have to be exfoliated daily, or she is at risk of developing a skin infection.  The scales are also a breeding ground for bacteria, and, just for fun, whole body yeast infections are also a constant threat.  Luckily for us, the scales are easily removed, and if I keep Moonpie hydrated and slathered with lotion she doesn't form new scales.  She hasn't looked like that picture in over a year. Of course, it may be the giant orange cup  and strawberry banana snacks  stuck to her face that make a difference....

Children with L.I. are often born as collodion babies.  It must have been terrifying, to be in  Kazakhstan and to give birth to a child who not only was ill, but whose skin was cracked and peeling off. 

The picture I've just linked you to is about a little boy named Ethan, whose mother I have gotten to know over the past year.  It is a remarkable site, showing what Moonpie probably looked like when she was born, and how wonderful kids with Ichthyosis can look when they receive proper care.

The past year has been trying, as I adjusted not only to being a first-time mom, but a first-time mom to a child with a special need.  Just so we are all clear, when we adopted Moonpie, we knew she had Ichthyosis.  What we didn't know was (a) how to care for her, or (b) what that would entail.

I was so blissfully stupid.

What I now know is that Ichthyosis causes transdermal water loss.  That means that Moonpie's skin has less water than my own, which puts her at constant risk of dehydration.  I carry sippy cups with us wherever we go, and tuck her in at night with a cup of water.  Now that she is older, she is able to pay attention to her body's signals and to ask for water when she needs it.

But my God, that first year was scary.

Because of the water loss, Moonpie also has trouble sweating.  Heat is now our enemy.  I dread summer, and going to other people's houses in the winter, with their heaters cranked up to 72°F.  The blasting hot air dries out her skin, and she starts overheating within minutes.   Because her body can't cool itself, if she gets too hot she could have a heat stroke, or worse.

If she gets sick and has a fever, she could dehydrate and overheat.  If I had known that when we were alone and sick in Kazakhstan, I probably would have lost it even more than I did...

My days are now divided between scrubbing off the dead skin, and slathering lotion back on.  After trying and rejecting what felt like every commercial lotion available, I devised a recipe for my own special blend that has worked wonders on Moonpie's skin.  I have a daytime lotion that I use on her, which is light and non-greasy, and a heavier "winterized" formula that I mix for night.

I love my blender.

Here we are on our first date


The chocolates were creams instead of nuts, but I decided to give him a second chance.

I like to imagine us growing old together:

It's a shame I never was able to do anything about my eyebrows, though....

Ours is a forbidden, timeless love.

I would, absolutely, adopt Moonpie again, and having a child with a diagnosis of Ichthyosis would not deter me.  I  mean, come on, tonight she climbed into my lap while we were eating dinner, reached out and grabbed each of my breasts in a firm little titty-twister grip, and announced "Mommy's boobies BIG!"

To which D hollered "Yes, indeedy!"

She's a riot, I tell you.

I owe a tremendous debt to the other parents of kids with Ichthyosis, who have guided me the past year and helped me deal with ... so, so much.

To help other people dealing with this condition, I have formed an association of sorts with Amazon.com, in which I am paid a commission for all purchases made through the links on this site.  I will donate that entire amount to F.I.R.S.T., the Foundation for Ichthyosis and Related Skin Types, a non-profit organization devoted to education, research, and finding a cure for people with all types of Ichthyosis. 

If you plan on making a purchase at Amazon, please come to my site and click on one of the links you see to your left.  It will take you to the Amazon site, and you can browse and make your purchases there. You don't have to buy the item linked, just use my site as a portal to the Amazon site.

You can also help support F.I.R.S.T. through donations made here, by giving to the Donor Choice Program at the United Way, or by participating in the Combined Federal Campaign.

Moonpie's condition is relatively mild, and for that I am grateful.  She can "pass" for normal, and not a day goes by that I don't think of the children who cannot.  I hope that someday a cure can be found for Ichthyosis -- not just for Moonpie, but for those with EHK and Netherton's and Harlequin, who have it so much worse.

So please, take a minute and shop Amazon.com through Uterine Wars, or make a donation to F.I.R.S.T.  With your help, we'll find a cure.

Moonpie thanks you, I thank you, and my blender thanks you.

Comments

[Simone]

Your blender is a Looker, Soper. You always did have marvellous taste.
There you go, already teaching us something new. A skin condition I was not aware of.....the human body is rather amazing (and tormenting) Isn't Moonpie a lucky sweetie to have you? She looks beautiful...even with a cup covering her face! I will check out the other webpages too & learn more about ichthyosis?
Good to have you back.

[Ollie]

Uh-oh.. you've just launched a whole new series of "Soper Boobs" web searches.

As a regular shopping at the Mall of the Amazon, I will be sure yours is the first stop en route.

[Erica]

Wow. What a year you had! I remember reading about Moonpie's terrible diaper rashes while you were still in Kaz, and I felt so awful for you both. I'm so glad her case is a mild one, but even a mild case sounds like so much work and worry. My heart goes out to those with severe cases, how frightening that must be.

I will be sure to come back here for future Amazon.com purchases, Soper! I hope you raise a ton of cash for this worthy cause...

[Heidi]

I'm glad you went over all of that in writing. I had forgotten how hard this has been for you. I assume Moonpie still has to wear cloth diapers? How's that been going?

I'll be making my donation to F.I.R.S.T. in Moonpie's honor.

You and the blender make a cute couple, by the way. I'm sure you create quite a "stir" at parties.

[Ashley]

I would be interested in knowing how you take care of the skin on her scalp. Do you have a special shampoo you use, or can you also use the lotion for the scalp without her hair becoming oily?

[Carmen]

It's so good to have you back! I've missed reading your Blog over the last year.
For those of us in Europe who order from Amazon.co.uk (based in the UK) could you do the same through them?

[Soper]

Excellent Questions!

Ashley, scalp issues are the hardest issues we have to deal with. I use T-Sal shampoo at least twice a week. Other days I use her Aquaphor baby wash as shampoo, then comb Curel lotion through when we get out. I use a lice comb while it is still wet to remove the scales, then we clean her ears (50% hydrogen peroxide/50% water mix) while she watches Elmo. The Curel is a little greasy, but after she sleeps on her hair and I brush it the next day you really can’t tell.

Carmen, I'm looking into the UK purchases question. I think Amazon can provide me with a link, and I'll add it so my buddies over the pond can help out, too. If you look at the link (in the post above) about Harlequin, you'll find out how to directly help people with Ichthyosis in the UK.

[Lioness]

Soper, could you give me the active principle in T-Sal, Aquafor and Curel? I assume what works for her lesions should work for my psoriasis too, winter is always painful bcs it seems I can never keep the skin sufficiently moisturised. What mixture do you make, exactly? If it's not a secret, that is.

[You should patent it if it's THAT good, think abt it.]

[J]

My uncle has icthyosis. I have no idea what it really entails apart from that his skin is flaky, or why I'm telling you, just that the name jumped out at me and I thought 'hey - that's the first time I've come across anyone else with it', however indirectly.

He was born in the UK in the 40s, so not a census point for you, but hey. touchstones...

[mama-beans]

Wow. JUST found you again after following your adoption story a year ago.

My husband has Ichthyosis. My now 10 month old son has it as well, X-linked.

The ONE non-prescription lotion we have used that has made a WORLD of difference is Melaleuca. Tea-tree oil. I now sell the stuff, I'm so enthused about it! Go to melaleuca.com and get a sample size. Try it. You will be astounded at how it works, seriously.

[Dee]

Really interesting to read this, as we have several things in common.

My late father had this skin condition although we didn't know what to call it, and his case was not so severe. I used to think he had the strangest looking legs in the world, though.

My son was adopted from Kazakhstan in 2007. He is missing his right hand but otherwise does really well. He is from Petropavlovsk, too. It's 30 degrees outside now and he thinks it's not cold. LOL

Dee