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
Gentle rubbing around the ears…
And the combing begins…
We comb all over, in all directions – very gently trying to comb out the excess skin on her scalp while protecting her hair as well.
And Daddy gets a little fancy with hairdos sometimes.
Brenna digs her mohawk look.
And lastly – her face. She hates her face being scrubbed, so I’ll spare you the unhappy pictures and leave you with this cute one.
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!
And on to the rest of our afternoon and evening…
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I was thinking about bath time this morning. Do you have to run more hot water with taking that long of a bath?
Nope – our MicroSilk bath tub has a jet that runs and it keeps the water temperature constant the whole time! It’s amazing!
Oooh, I want one. They should have you as their spokesperson and do a giveaway on this blog. 😀
Hmmm, a giveaway – now that’s an interesting idea! 🙂
I LOVE THAT BABY GIRL and HER BIG BROTHER?
I love these stories raising awareness!!! You two have to be two of the greatest parents out there and I’m so glad you let us in for a glimpse every once in awhile!!
Wow that is so kind, thank you 🙂
Her bath routine looks fine tuned and full of love! Her skin is looking awesome, the baths really really help! Also I highly recommend the Puj toddler towels! 🙂
Is the redness during the bath just from the rubbing and increased blood flow from that, or is the skin underneath painful? Thanks so much for educating us on your sweet baby girl!
No, the skin underneath is just more layers of new skin… the redness is from the rubbing, I’m sure.
Thats what i was thinking since she isnt so red after the bath. She is just so stunking cute with those giant smiles!
Courtney I just love reading your stories and I especially love hearing about Brenna & Connor. The pictures of these two cuties are absolutely adorable thanks for opening your heart and sharing such an inspirational story.
Thank you!
Thank you so much for sharing your journey with us. I am always looking for Brenna’s beautiful smile. You are such an amazing family. Hugs to all.
i love how you take time not only to care for her but to make it fun as well…i was wondering if aquaphor causes any buildup in your pipes or does the final hot rinse seem to help , we get clogged pipes here just from hair product and such..she looks cute with a mohawk and some day she will love how you preserved not only her skin but her hair as well …love these peeks into your life, thank you for sharing them
The bath probably doesn’t get Aquaphor build-up (a lot of skin pieces though!) but I’d hate to see the pipes from our laundry room! If our washing machine is any indication, there is a lot of build-up.
That Mohawk picture is so cute!
Have you tried using goat’s milk soap or lotion for Brenna? A lot of people aren’t aware of the benefits: it contains lots of vitamins, naturally occurring acids (alpha hydroxy, lactaid) that help remove dead skin and irritations, it’s extra moisturizing, very mild, absorbs quickly and the soap has a wonderful lather. I have sensative skin that gets extremely dry and itchy in the winter, lots of painful cracking and bleeding on my hands/feet/joints, goat’s milk soap/lotion has been the only thing doesnt burn and cures the cracks the fastest. I like to buy mine from various Etsy shops, since store bought tends to have unnecessary harsh addatives, plus there’s a larger variety and lots of cute soaps made especially for kids!