Day in Our Life: Bath Time

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.cIMG_9424

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 layerscIMG_9412

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.

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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 :)cIMG_9426

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. cIMG_9434

Gentle rubbing around the ears…cIMG_9447

And the combing begins…cIMG_9457

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.cIMG_9459

And Daddy gets a little fancy with hairdos sometimes.cIMG_9478

Brenna digs her mohawk look.cIMG_9488

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.cIMG_9440

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.cIMG_9212

Oh, look who’s here to join the fun…cIMG_9208

Someone thinks her brother is hilarious :)cIMG_9194

And now it’s time for more Aquaphor!

To be continued…

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A Day in Our Life: morning

I can easily write about our days – our routines, our challenges and more – but sometimes it’s even better to show. I can describe about what bath time is like, or how much Aquaphor we use and how it builds up in our laundry, but until you see a photo or video, it probably doesn’t really sink in. So 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…

It’s a Tuesday, which I always love. There is something so simple about Tuesdays, and it’s also a day with a little structure, as Brenna has therapy at 10:00 and Connor has gymnastics at 11:00 every Tuesday.

My alarm is set for 5:45 a.m., but Brenna’s crying wakes me up at 5:15. She’s sitting up in her crib scratching her head, so I put on medical gloves and get out a tub of Aquaphor, which is sitting in a wipes warmer to stay warm. I take a small dollop of Aquaphor, rub it all over her head and put on a new hat.

I try to lie down in my bed again to get 20 more minutes of rest, but Brenna’s crying again at 5:30. She’s scratching her arm now, so I repeat the process above and pull down her sleeper sleeve to cover her skin and try to alleviate the itch. (Evan was up with her at 2 a.m. dealing with scratching and restlessness too.)

I decide to just get up and shower at this point instead of waiting for my alarm.
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After my shower, I make coffee and read my Jesus Calling devotional. I’ve been slacking on this lately, but I pull it out today.

Right around 6 a.m., I sit down on my desk. I have a to-do list I made the night before to work on – emails to return, a blog post to work on, and a new freelance article that was just assigned to me for a local magazine that I begin to plan out.cIMG_9245

My desk top is messy right now, but at least I have cute lap company :)
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A little after 7:00, Evan comes down to get breakfast. We chat for a bit and he leaves for work around 7:15 while I headed upstairs to dry and style my hair.

Connor gets up about 7:30, so I head back downstairs with him to get him some juice. He usually doesn’t want to eat first thing, and Tuesday and Thursdays we usually take our mornings slow, so after some conversation and cuddling, I turn on a Disney show for him to watch.cIMG_9248

I pull out my menu plan to figure out the week. I usually do this the weekend before, but we’ve been out of town. I’m keeping things simple this week and I mostly need to stock up on perishables at the grocery store since we’ve been gone. I also plan for some freezer cooking. I’m going to make these egg and sausage muffins (but with roll sausage, not links), and sausage and peppers (we serve over noodles). I also plan to double a delicious recipe for cheesy chicken spaghetti casserole and give one to my sister-in-law, who is expecting her 7th baby in July. cIMG_9250
At 8:15, it’s laundry time.

First, I soak Brenna’s clothes in the sink with hot water and OxiClean. I’ll let these soak for a few hours before throwing them in the washer.cIMG_8891

Our laundry room at our new house has two washers – one for Brenna’s clothes and one for the rest of us. It’s makes laundry so much more efficient and helps save our clothes from Aquaphor!
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Then I tackle some of the laundry build-up that I didn’t get to yesterday. I fold and put away several loads.cIMG_8901

At 8:40, I grab cereal bar for breakfast, and sit back down at the computer to do a few more tasks. Time gets away from me, and so I run up to wake up Brenna about 9:15. She’s not a morning person, though she will need to start adapting to earlier mornings each day once she starts school 5 days a week in August!

Brenna is usually slow to get going – she’s both tired and probably a bit sore in her skin and joints. She reminds me of a little old lady in the mornings :) She often has her breakfast in bed, because she’s a diva. (Actually, it’s more to save time, so that she can move slowly but also at least be starting breakfast and get some energy from that food).cIMG_8894

It’s Aquaphor time. I get her completely undressed, wipe Aquaphor all over her body, and get her dressed in her outfit. I end up with some grease streaks on my arms, which I rub in (I have the softest forearms, if you were wondering…) Connor is also upstairs getting dressed at this point too.

We all head downstairs for breakfast. Connor loves sitting at the breakfast bar whenever possible. I pull out banana bread for my second breakfast from the freezer, and I let the kids choose their meals – sausage for Brenna and homemade banana muffins for Connor.cIMG_9251

Bring on the protein!
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I pack up some snacks (pepperoni and goldfish crackers, and waters for both kids) and we head out the door about 9:52 a.m. for 10:00 therapy. I love living close to school!

Today at therapy, Brenna’s OT works on arm strength and lacing and letters…cIMG_9262

We have this cute little therapy room to ourselves and Connor always busies himself with whatever activity Brenna isn’t doing. I usually divide my time between conversing with Brenna’s OT, cheering Brenna on, and playing with Connor.cIMG_9265

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Love how Connor is peeking out the back :) He has his moments (usually wanting to jump in and complete activities for her!), but is a big encourager to Brenna during therapy for the most part.cIMG_9268

We head out at 10:30, and drive 25 minutes into town for Connor’s gymnastics. The kids have their snacks during the drive. 

I usually drop Connor at the gym, and use that 30-45 minutes to run errands since we’re close to all the stores. Today, we head to Old Navy, so I can get some new jeans (haven’t bought new jeans since November 2013 – it’s probably time :) )

With 15 minutes left of gymnastics, we head in to watch Connor finish up. He lights up when he sees us every time and gives us big waves.

The 25 minute drive back home is when we all start to wear down. The kids are getting hungry and demanding, and I’m worn out from a long morning. I could really use some peace and quiet, but it never happens, and my patience wears thin.

Once home, I fix a very quick lunch for the kids, and I step away to do a quick laundry change (and let’s be honest, to get some quiet).

I drain the sink with Brenna’s clothes, and a lovely little Aquaphor ring is left for me to clean.cIMG_8897

The hot water and OxiClean definitely help to break up the Aquaphor in preparation for a good wash.cIMG_8895

The clothes then go into the washer on a hot load with free and clear laundry detergent and lots of Dawn dish soap. (read more about our laundry routine here. It’s changed a little at our new house, but most of it still rings true.)
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It’s around 12:45 now, and I help the kids clean up from lunch. Brenna is tired and wailing about wanting her binkies, and I’m more than ready for a break to re-group. We all head upstairs for one of my favorite times of the day: Quiet Time! :)

To be continued…

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Hearing the Music: a guest post by Tina and Rog Thomas

We were inundated with people in the ichthyosis community reaching out to us after I started blogging when Brenna was born, and it was hard to keep everyone straight sometimes – who belonged to what family and what kind of ichthyosis they had. But there was one couple who really stood out – Rog and Tina Thomas. They had adopted a little girl in Hong Kong who was born at a time when surviving Harlequin Ichthyosis was nearly unheard of. Mui is one of the oldest in the world with HI, and just in recent months has begun to share her story. This family has such a touching story and message, and I know that they are changing lives by sharing, both in media and through their book, which will hopefully be published soon. Here are Mui’s parents Rog and Tina Thomas, in celebration of Ichthyosis Awareness Month…

A German philosopher once wrote: “And those who were seen dancing were thought to be insane by those who could not hear the music.”

People often do not understand how someone can fall in love with a child who does not correspond to society’s definition of perfect. Perhaps they simply cannot hear the music?

When our daughter, Mui, was three years old, and before the adoption process had even begun, she was handed over to my husband Rog and me in a car park, with the words: ‘I think, Tina, you might as well keep her.’photo (16)

We never intended to adopt a child, let alone one with a life threatening skin disorder like Harlequin Ichthyosis, which makes the skin grow ten times faster than normal.

Yet our life has never been tinged with regret.

Rog and I decided to write a book, The Girl Behind The Face, to share our story of how two ordinary people saving to start a new life and a birth family in Australia came to adopt and raise an abandoned child with a rare, deforming skin disorder in Hong Kong.

I know personally what it is to be unwanted and rejected and be punished for it; I know what it is to witness beatings dished out and received by others; I know what it is to feel helpless and feel unable to make a difference.

And sharing my story, which touches on Auschwitz, abuses and the Baader-Meinhof gang, and love, fear, violence and death, provides a context and a foundation for understanding how Rog and I could be of help to Mui, whose reward for fighting to stay alive was to be hidden away on the very fringes of society in an institution that could, at best, be described as inappropriate.

Life’s not been easy raising Mui – of course it hasn’t – and life’s rarely been straightforward. Nevertheless, Rog and I have done whatever necessary to ensure Mui has lived her life with a smile on her face because she is our daughter and we love her – often we’ve been the webbed feet paddling furiously beneath her swan that glides serenely!

A woman has spat in my face while I held Mui in my arms; a man has followed Rog down a street screaming abuse at him while he held Mui in his arms; Mui has been banned from her school bus because of her appearance, yet we choose to focus on the positives – we choose to have a happy day not a sad one.

We have confronted and overcome each obstacle placed in our path without blame. We have expected nothing, but have grasped opportunities when they have presented themselves. And we have embraced all the good times together with great relish.photo 164kb

Even when Mui’s life hung in the balance during hospitalisations and I would sleep on the floor beneath her bed so as to be there for her before she was adopted; even when she raised her fists in anger at children who were mean to her and Rog had to counsel her; even when cyberbullies brought her to the brink of suicide, we never gave up believing there would be a tomorrow – and a bright one at that! Because we’ve not lived this life in order to live in sorrow. We cherish our dreams.

Our book is our response to the cyberbullies.

We’ve spent a lifetime avoiding all forms of publicity; now we court it. Why? Because sometimes you must reveal yourself in order to disappear into a crowd.

Abandonment issues and attachment disorders continue to complicate family life – they are the invisible differences that so frequently discomfort people who wish to put Mui on some saintly pedestal.

Well, our daughter is not an angel – she’s a bright and breezy 22-year-old woman just like any other. Only of course she’s not because she was born with a visible difference.

Nevertheless, she’s been raised with the Australian dictum: Give it go!

So, though Mui should avoid direct sunlight and can’t control her body temperature because she cannot sweat, and she suffers from arthritis, our daughter can be seen dashing around the rugby pitches of Hong Kong because she’s the world’s first rugby referee with Harlequin Ichthyosis!action pic

We hope our book, The Girl Behind The Face, and our Facebook page of the same name, will help raise awareness of visible differences, invisible differences and cyberbullying, as well as encourage greater tolerance and understanding for those with special needs in the community

One thing I know for sure is that you really can rise above the problems that happen in your life and do some good for others.

Rog and I have not made it to Australia: we had to give up that dream when we adopted Mui.

Some people thought us insane.

Yet we could hear the music, and we’ve realized a bigger dream: we’ve done some good for someone else who society had rejected.

Rog and Tina live in Hong Kong with their daughter, Mui. You can find them on Facebook, and on Twitter, and Rog also writes a blog.