Anna Liberty

A girl who's one-in-a-million

The Morning Routine

on June 11, 2012

Most mornings, Libby and I wake up to either the sound of an alarm clock or the sound of Anna ready to get out of her crib.  But before you know it, Anna is smiling and happy and wouldn’t you know it – wanting to head outside.

Problem is, with Anna’s XP, she can’t go outside before we take her through the morning routine.

Once Anna is in a clean diaper it’s lotion time.  Anna dislikes lotion time. A lot. It’s not because the lotion hurts her skin – I think she just doesn’t like staying still.  But we do it, nearly every day.

Xeroderma Pigmentosum is Greek for “dry, pigmented skin.” To keep her skin soft, we lotion her using Aveeno daily moisturizing lotion. It’s gentle, fragrance-free, and recommended by dermatologists.

After that layer of lotion, we then move to the sunblock. Right now we are using Aveeno Baby sunblock of SPF 55.  If we are in a hurry, which is most of the time, we’ll mix the two lotions in our hands before applying it to Anna. Even on the days she doesn’t go outside, we still lotion her for the small amounts of UV from lights, open doors, etc. that might affect her.

Now it’s time to get Anna dressed. The usual outfit includes jeans, because they block the sun so well.  When we can’t get her in jeans, we use thick tights and a skirt that have been washed in SunGuard, making them better at blocking UV light.  She always wears socks – no flip-flops outside for a kid who can’t be exposed to the sun.  We add a cute top and now she’s ready to go!  Wait, not really.

Next, we help Anna put on her “makeup.”  In reality, it’s more sunblock, this time for extra protection for her face.  We use Aveeno baby sunblock stick with SPF 50+, because she can handle it much better than the lotion from the bottle.  We’ll often give her hands extra protection using the sunblock stick.

Just before she walks out the door, we do the last three steps of getting Anna safe and ready for the outdoors.  First, she puts on her gloves.  Really, they are mittens because it’s been hard finding uv-blocking gloves that fit Anna’s tiny hands.  Second, she puts on her denim jacket.  Sometimes, if she’s wearing a long-sleeved shirt that blocks UV light really well, we’ll skip the jacket. But most of the time she wears a light top with the denim jacket on top.  Lastly, Anna puts on her hat, custom added with uv blocking plastic and a soft denim drape on the back to cover her neck.
These are the steps we take each day before Anna can go outside.

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