Saturday, July 28, 2012

Thursday, July 26, 2012

Augmentative and Alternative Communication

Mike and I just got back from a 3-day Pragmatic Organization Dynamic Display (PODD) communication workshop. The training was excellent. We came back excited, hopeful, inspired, and...tired! Please click here for more information about PODD.

The PODD system enables individuals with complex communication needs to have an autonomous voice. We know Caroline's understanding of language is on target for her age. And we know she has a lot to say. However, Caroline's apraxia and her inability to use her hands (to point) creates a real challenge with any communication system. 

Since Caroline is unable to point, we are are going to explore the partner assisted scanning method. We anticipate spending several months (maybe even years) modeling the PODD communication system before Caroline is able to use it expressively. We also need to work on teaching her to indicate "yes" and "no." For "yes," one option is to have Caroline aim her chin towards a switch (or a picture card like this one) in front of her face. For "no," she could press her cheek against a switch next to her face (a movement that would force her to turn her head to the side).

We have a lot to work on. We are not sure if this system will work for Caroline, but we are going to give it our best shot. 

I am happy that Mike and I attended PODD training together

Caroline had fun with her Abuelita and her Tia Abuela (my aunt) while we were away

Tuesday, July 17, 2012

Cooperative and patient

Caroline had a dentist appointment on Monday. I can't believe it's already been 6 months since her first one back in January!

Rett Syndrome has a knack for throwing curveballs. Caroline's sensory issues cause her to vomit if we brush even just her front teeth. As a result, we now only brush her teeth in the morning before she's had anything to eat or drink. We use teeny amounts of toothpaste, but we haven't figured out the best solution for rinsing her mouth since she is unable to spit. Yesterday's exam revealed that the combination of Caroline's constant teeth grinding (one of the hallmarks of Rett Syndrome) and her acid reflux is beginning to compromise her two front teeth. 

Caroline was cooperative and sweet during the entire appointment. It was only when the dentist approached her to say goodbye that her eyes welled up a bit. She frowned and stuck her bottom lip out, but she held it in. She didn't cry. It was clear she didn't appreciate being poked and prodded. She was either too polite or tough to show it.

Monday, July 16, 2012

Going on walks

I've been taking Caroline on hour-long walks as part of my training. I love the way she takes so much pleasure in something as simple as going on a walk. She "sings." She giggles. She laughs. She looks around and smiles. She takes it all in. Her happiness is contagious!

Below are pictures I took on one of our walks this past weekend. I love the way she throws her feet up in the air.

Sunday, July 15, 2012

A little date at Imagination Stage

My dear friend Aly arranged for Caroline and her adorable son Santi to attend the Wake Up Brother Bear show at Imagination Stage. The show was interactive and fun. We all sat in a large circle surrounding the play area. Santi and Caroline had a blast (lots of happy shrieking and laughing!). Caroline would laugh at something and then turn around to see my reaction as if to say "did you see that? wasn't that funny, mommy?"

I met Aly the week I moved to DC for grad school back in 2000. Aly is one of the sunniest, most genuine and loyal people I know. During the difficult weeks leading up to the diagnosis, she checked on me daily. She reassured me that no matter what happened, I would be okay. She always focused on the positives. Our friendship makes me feel like nothing has changed. I never feel like we are "different" around her. 

A clip of the show 
Pictures from today 

 Aly and me (8 months pregnant with Caroline)  
Under the Mistletoe (10 years ago)

Tuesday, July 10, 2012

Running a Half Marathon for Caroline!

It's official! On February 24th, 2013, Min (my sister) and I are running the Disney Princess Half Marathon with the Girl Power 2 Cure team to help Caroline win her fight against Rett Syndrome! 

Our family is committed to giving Caroline a rich and happy life, but there's only so much we can do to shield her from the progression of the disorder. Girl Power 2 Cure raises funding for researchers who are working hard to find treatments for the disorder. Their research could lead to the reversal of Rett Syndrome symptoms in Caroline's lifetime!!!

Please consider sponsoring us. We are going to designate all of our team funds to research to help Caroline and other girls just like her. Our fundraising page is

You may also write a check to GIRL POWER 2 CURE INC (specifying “Team Running for Caroline Lily” on the memo line) and give to us OR mail directly to:
Girl Power 2 Cure 
Disney Princess Run
2891 Breakers Court
Amelia Island, FL 32034
We deeply appreciate your help.

Sunday, July 8, 2012

Progress with Gait Trainer

Caroline's very own gait trainer, the Kid Walk (in pink!), finally arrived a couple of weeks ago. But the real exciting news is that she's made some amazing progress in just the last few days!

Caroline has tried a few gait trainers in the past (click here and here to see the old ones). In March, we got the Kid Walk on loan. For the first couple of months on the Kid Walk, Caroline would let her body hang, often complaining after a few minutes. We knew that the more time she spent in it, the stronger she would get so we kept pushing her.

This past week, we finally had a breakthrough. Caroline suddenly figured out how to move around using her legs! She first realized she could push herself backward. She's now determined to move forward. The goal is for her to use the Kid Walk to initiate steps on her own. Caroline is working very hard to learn the coordination of putting one foot in front of the other.    

Yesterday, Caroline spend over an hour "exploring" and having a blast while listening to her music. Mike and I could not believe that she was having such a good time on the gait trainer! We think she appreciates having another activity that enables her to enjoy some "independent" time. We also think she likes being upright.

Caroline on her Kid Walk   

Saturday, July 7, 2012

Caroline's first haircut

Caroline got her first "real" haircut today!

We've been trimming her bangs to the best of our ability since she was an infant. This week, we decided it was time for some professional intervention.

Mike and I had been a bit nervous about taking her to a hair salon. Mainly, we were worried about her ability to sit still around scissors (given her involuntary and sudden jerky movements).

I'm happy to report that her first haircut went smoothly! As usual, Caroline was super cooperative, patient, and sweet. Sometimes, I can't believe how lucky we are. I feel like we've been blessed with the sweetest little girl in the world.  

Some "before" pictures

Caroline enjoyed getting "pampered"

A couple of "after" pictures

Wednesday, July 4, 2012

Running for Caroline

I ran my first 5k today!!  My inspiration and motivation? Caroline.

About 3 months ago, my friend Soojung convinced me to run the 2013 Disney Princess Half Marathon with the Girl Power 2 Cure team. Soojung and other Rett moms had run the 2012 race earlier this year to raise funds for research to find treatments for our girls. At that point, the thought of running even one mile seemed like a tedious and arduous effort to me. I had rarely made time for fitness after Caroline's birth (and especially after the diagnosis). But I loved the idea of running to give Caroline a chance at a healthier life.

I started training in April. In the beginning, Mike ran by my side for support. Sometimes, I took Caroline out with me. The first couple of weeks of training were challenging. I often wanted to quit, but thinking about Caroline kept me going. Running is nothing compared to all the hours of sweat and tears she puts into her therapy sessions every week.

I figured I should first test my ability to train by preparing for a 5k race in the July and a 10k race in the Fall. Today, I proved to myself that I could do this for Caroline.

1224  people ran. I was excited and nervous about running my first race! 

Here's my face of pain near the finish line. I spotted Mike and Caroline at this point. Mike was yelling encouraging words! I finished in 29 min 54 seconds. 

Doris ran too. She is an awesome person. Her daughter Edda also has Rett Syndrome (click here to follow her blog). This journey would be very different without Doris and my other Rett mama friends. I love these women.

Here's the reason I started running. 
On a cute note, Caroline wore a ballerina outfit (a gift from Grandmom!) to school on Tuesday. 
Because she's just fabulous like that.