Anna Liberty

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

Strawberry Days (and Nights)

Strawberry Days

Every year as summer begins, Libby’s home town gathers together for the Strawberry Days celebration. It’s been her long-held family tradition to go to the parade, the rodeo, and eat fun treats like strawberries and cream.

This year, we were nervous about taking Anna to the parade. The weather forecast predicted temperatures in the mid 90s – and we were afraid Anna would be sweltering in her hat and gloves.

The night before the parade, we decided we’d at least go for the first part of the parade and see how she’d do. We thought Anna might be most comfortable in her customized stroller, where she could just wear a light shirt with jeans and ditch the gloves. Libby even converted one of her purses to be a skirt around the front of the stroller, better protecting Anna from the sun.

However, once we were at the parade,with lots of other kids running around, inside the covered stroller was the last place she wanted to be. We put her back in her jacket, mittens, and awesome hat so she could sit on Grandma’s lap and watch the parade go by.

We had a great time with Anna at the parade. With a light breeze and our prime spot in the shade, Anna didn’t get too hot. She loved seeing the horses, bands, and colorful floats blasting fun music. Not to mention all the candy tossed her way!

We had a great time with the family and were so glad we could keep this tradition alive, even with Anna’s XP!

Strawberry Nights

A few nights before the parade, the carnival set up shop in the city park. As soon as the sun set, we took Anna right over to experience her first carnival rides. First up was a simple ride with little cars, trucks, and motorcycles going around in circles. Do you think Anna liked it? See for yourself:

We even caught her on tape having a blast on her first-ever carnival ride all by herself:

Up next were the flying saucers. I was a nervous dad as I set her in the spaceship; this ride went up pretty high and the strap was not as snug. But Anna loved it and soared in circles with a huge smile on her face.

After going down the big yellow slide with her aunt Sophie, we took her to the fun train where she smiled and waved at everyone she passed by.

As the carnival wound down, we stopped to take a quick family photo outside the carousel. We may not have been able to make it to the rodeo this year, but we’re going to keep the new family tradition of a night out at the carnival!

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Anna loves Buzz a little TOO much…

You’ve met Buzz, Anna’s best friend.  Buzz is a cute little dog that Anna’s grandpa gave to us as an Easter present. I wrote about welcoming Buzz to the family in this blog post.  From day one Anna has been in love with this dog. She follows him, sits by him, and hugs him several times a day.  We thought an indoor companion would help Anna deal with her XP.


Buzz has always been a mellow dog and taken it in stride (He’s about 6 years old).  We’ve always tried to keep Anna from strangling Buzz with her tight hugs. We’ve  tried to keep her from trying to force Buzz to kiss her face. But we’re not always successful. Anna just loves Buzz a little too much. We’ve grown fond of him, too.

Most people have a tipping point of how much they can take, and I guess dogs do, too.  A few days ago, we took Buzz to a family party where he wasn’t treated very well by the little kids in our family. Out in the backyard, they poured some soda on him and called him “stupid mutt.”  I don’t think he enjoyed the party as much as we did.

The next night, Anna was snuggling with Buzz, and playing a little too rough with him.  Anna would hold his face and kiss it and try to get him to lick her cheek.  She’s done it before, and we’ve always told Anna to “be soft” and “don’t play with his face.” Nevertheless, Anna continued to do so, and before we could stop her . . . Buzz yelped and bit Anna’s cheek.

I quickly scolded Buzz, took him away from the situation while Libby took care of Anna.  As you can see, Buzz’s teeth got Anna pretty good on her cheek.  She cried for about a minute – but I guess the bit didn’t hurt as bad as it looked.  Anna was ready to play with Buzz and go back to his face even – not a good sign for the future.

A quick visit to the InstaCare told us she didn’t need stitches, but they did use that dermabond glue to hold two of the bigger cuts together.  We were relieved Buzz didn’t bit her half an inch higher – or we could have been in the ER hoping Anna’s eye was okay.

Anna is feeling just fine, but has some healing to do.  We have been keeping her away since the bite happened because it didn’t phase her.

We were faced with a tough decision . On one hand, Buzz is Anna’s favorite friend. She loves to play with him and cuddle with him.  I’m confident that if we could help Anna understand to be gentle, then the risk of a Buzz bite happening again is very low.  And we’ve grown to love the dog.
On the other hand, we don’t like to take risks with our daughter’s safety. Plus, we had hoped that Buzz would help keep Anna happy inside – but Buzz asks to go out more often than Anna!  And a few incidents of dog pee on the carpet isn’t working in his favor.

We love Buzz but he came from a family that had lots of fields for him to run and play in. He also didn’t have to deal with a little kid  in his face.  Anna is still too little for a pet right now. She doesn’t know how to be safe around animals. We have decided to return him to his original owners out of the best interest for Anna’s safety and Buzz’s happiness.

If you were in this situation what might you do?


The Morning Routine

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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