In honor of Ichthyosis Awareness Month, I’m going to run a couple of posts showing one of our days through photos (and linking to some videos on Instagram) to give you a visual of our life with Harlequin Ichthyosis… Following up on my Morning post, I was planning to do an “Afternoon” Day in Our Life until I began editing the bath time pictures, and I decided that this is such a huge part of our day, every single day, it deserves its own post. (Sorry the color is a bit wonky because of the lighting in our bathroom and I got a little lazy when editing 🙂 )
Brenna’s bath time is essential to her skin – and it’s not the playful, relaxing type of bath that most kids have. Though bath time has become much more enjoyable for all involved after we got a MicroSilk bath tub installed in Brenna’s new bathroom, it’s mostly work and a little play. Bath time takes about 45 minutes to an hour, start to finish.
Every day during bath time, Brenna’s skin soaks up the moisture of the water and softens. Once her skin is soft, the extra skin that her body produces is able to be scrubbed off more easily. Basically, her body makes too much skin and she can’t shed it quickly enough…so we help this shedding process along in her daily bath when we exfoliate this excess skin. Otherwise, her skin would build up quickly and become very thick, uncomfortable and start to crack, leaving her susceptible to infection.
Getting Brenna’s face wet throughout bath helps it to soften so we can rub off extra layers
The bottoms of Brenna’s feet build up the worst. Just like our skin is thicker on our feet, so is hers. Sometimes we have to use a retinoid cream called Tazorac on her feet, which helps the shedding process. Then in the bath, we try to lift and peel off those extra skin layers when they are ready to come off.
Most of our bath time is this, all over…
My kid makes skin faster than your kid. I think it would be a good bumper sticker, no?
Then comes the scalp care. Daddy is still the best, but Mommy is holding her own when it comes to Brenna’s hair now 🙂
We use Aquaphor Shampoo on most days, and every so often, we will also use the anti-itch shampoo called Promiseb Plus to try to alleviate the itch that plagues Brenna at night.
Brenna digs her mohawk look.
And we’re done!
As the bath tub drains, we wrap Brenna up in her towel that is all nice and cozy from her towel warmer. She patiently waits a couple of minutes so we can rinse off all of the skin from ourselves and rinse out the bath tub a bit from all of the skin flakes before it gets a deep cleaning.
Oh, look who’s here to join the fun…
Someone thinks her brother is hilarious 🙂
And now it’s time for more Aquaphor!
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