New Ankle Foot Orthosis (AFOs)

Today, we picked up Caroline's new Ankle Foot Orthosis (AFOs). At the suggestion of Caroline's orthopedist, we followed up with an orthotist to get her fitted for the braces.

Caroline is a little wobbly with her new AFOs, but she'll hopefully adjust to them in the next few weeks. These ankle braces will help align her ankles and assist in proper joint development. They will also prevent further tightening of her achilles, which is already becoming an issue.

Seeing Caroline in her AFOs is bittersweet. I am grateful that Caroline has access to assistive devices that will help her mobility in the long run. But I have to admit that it hurts my heart to see my little girl's arms and legs in some type of brace. I'm always surprised by the kinds of situations that trigger feelings of sorrow all over again. However, I've noticed that those feelings don't stick around for as long as they used to.

Below are pictures of Caroline modeling her new ankle braces

Kicking the ball!

Caroline's physical therapist is incredibly committed and creative. Each week, she shows us new tricks to get Caroline stronger and moving. Whenever possible, we try to make Caroline's exercises fun.

Here's a video of Caroline working on kicking the ball!

Enjoying music

Listening to music is the one activity Caroline is able to enjoy independently. Music has always been part of her life, but now...she just LOVES it! Watching Caroline experience such sheer joy means so much to Mike and me.

Caroline has made it very clear that her two favorite CDs are the Best of the Laurie Berkner Band and Sesame Street's Silly Songs. A couple of months ago, we discovered that she had a preference for Laurie Berkner when someone gave her a mixed CD. Each time the song "Moon moon moon" came on, she would hold still (very unusual for Caroline who is hyperkinetic), listen carefully, and grin from ear to ear. There's something incredibly soothing to her about that particular song.

A video of Caroline listening to Laurie Berkner

Caroline watching old school Sesame Street's Silly Songs (a family favorite!)

I love someone with Rett Syndrome

Caroline's grandmom is in the Florida Keys. She found a street called "Caroline." And she happened to be wearing an awesome T-shirt too.

Valentine's Day

Caroline received a Valentine from her friend JJ.  He's my friend Sherry's sweet 3-year-old boy. The Valentine arrived in mail on February 14th. Caroline loved it!  We put it up on the fridge where she could see it every day.  

Caroline also received a beautiful handmade chocolate dessert shaped like giant Hershey's Kiss (along with the most touching note) from her aunt Emily.

Here she is standing next to JJ's Valentine. Caroline is able to stand against a wall by herself for up to 5 minutes now!

 

 Caroline and her Aunt Emily 

Matching haircuts

I decided to cut my bangs to match Caroline's.

Chatting with Caroline

Here's a little video of Caroline chatting with us!

Laying the foundation for communication

Caroline's understanding of language is on target for her age. The development of her receptive language skills have not been affected thus far, regardless of the progression of Rett Syndrome. However, her ability to vocalize certain sounds seems to be slowly declining.

Caroline is no longer consistently using the 2 or 3 words she still had left. I remember the last time I heard her say "mama." At Thanksgiving dinner, she looked right at me and said it so clearly and deliberately with a huge smile on her face. It's been a while since we've heard her say anything other than "ba" or "da" (words she uses to call Mike). Caroline's ability to vocalize sounds may be affected by Rett, but her perseverance is not. She still attempts to repeat words and sounds she hears. She is not giving up. She wants to talk and be understood!

Unlocking Caroline's voice is a priority. We're first focusing on laying the foundation for assistive communication by inputting vocabulary and encouraging her to use her eye-gaze to make choices. We're starting to use "Yes/No" cards during specific circumstances that illustrate their meaning. These Yes/No cards may be a bit abstract for a 2-year-old, but the hope is for Caroline to eventually look at the appropriate card to communicate her wants and needs. We are also slowly introducing picture cards as an augmentative communication method. The goal is to establish a system of communication that can later be adapted to an eye-gaze computer.

I have to admit that this is all still very new (and somewhat intimidating) to us. But we're  hopeful and excited about soon hearing what Caroline has to say! I know we're all going to figure this out together. 

Mike and I made these cards

  

Picture cards to communicate eating and drinking needs

 

We're a team!

High Low Chair

Caroline got a High Low Chair today, thanks to an awesome and generous mom who got it from another awesome and generous mom (and also thanks to Mike's parents who picked it up for us!). We're also working with Caroline's physical therapist to figure out an appropriate adaptive stroller, a bath chair, and other equipment to meet Caroline's positioning needs.

I love my fellow Rett families. They've helped us navigate this sometimes complex world of Rett--from coping to figuring out the right adaptive/assistive equipment. I cannot imagine going through this journey without them.

Caroline seems to like her new chair!

 

A visit to the National Air and Space Museum

Caroline met her friends JJ and Daisy for the One World, One Sky: Big Bird's Adventure show at the National Air and Space Museum's Planetarium. Lots of smiles and giggles--everybody had a blast! 

Caroline's friends

Caroline loves being around her friends. I am amazed at how young children seem to develop special bonds with each other. I'm also moved by their ability to show compassion at such a tender age.

Caroline's friends are incredibly sweet and gentle with her. Her classmates have become quite protective of her too. They make sure she has toys in front of her. They sit next to her to keep her company. They hug her. They sing to her. And they even "read" to her! They are all around the age of 2, but these touching interactions have been taking place for a while now.

Friendships seem to start very early in life.