Happy Halloween!

Today, Caroline's grandmom joined us for the halloween parade at school.   I decided to recycle Caroline's costume from last year because it was sized 12-24 months. Last year, it was a little big. This year, it was a little snug...but she was still impressive as a shark!

Here are some pictures for comparison.  It's official.  Caroline is no longer a baby.  She's starting to look and act more like a little girl.  

Halloween 2011 (21 months)

Halloween 2010 (9 months)

 

Progress with physical therapy so far!

Caroline had made consistent progress towards standing and walking.  She works SUPER HARD on her her physical therapy.  We're so proud of our girl!  

Here are two videos demonstrating her walking and standing skills!

Acceptance Stage (and wanting to rush to it)

In the last couple of weeks, I've come to terms of with the fact that I will always feel some level of sadness over Caroline's diagnosis.  She is awesome just the way she is and I am incredibly proud to be her mother.  But it pains me to see her get increasingly frustrated at her inability to talk or move around on her own.  Its' clear that she desperately wants to do these things and is very much aware that she cannot.  Sometimes, Caroline looks up at me like her sounds make perfect sense in her head and she doesn't get why I am not understanding her.  I hate Rett the most during those moments, but I always tell her that "we'll figure this out soon." 

I still cry over her diagnosis.  I was feeling bad for still feeling "bad" about this whole thing until another thoughtful and kind mom shared some wise words.  She helped me realize that it's okay to always carry a bit of sadness over Caroline's condition and still move towards a place of acceptance.  I think I was desperately trying to rush to the "Acceptance Stage" because these last 6 months since the diagnosis have been tough and I was tired of feeling sad and scared.  I just wanted to move forward and get past the grieving part.  As simple as this sounds...it just takes time.  I need to let myself grieve and acknowledge the role the diagnosis plays in our lives.   

Caroline certainly makes everything easier.  Tonight, Mike and I were talking about how we've never once felt like we were missing out on something, especially when we're spending time with her.  Caroline loves unconditionally, she makes us laugh, she makes us proud, and sometimes, she even pushes our buttons like a typical kid!  There is no need for pity here.  Every family has their share of challenges and we don't want anybody feeling sorry for Caroline (or us).  We just wish that she always be treated with love, compassion, and respect.

Here's a little video of Caroline enjoying one of her favorite toys.  It plays music, she can reach out and touch it (with the help of her arm splint), and it offers plenty of opportunities for learning!

First trip to the zoo!

Caroline had a date at the Baltimore Zoo with her new friend Sydney and her cousin Angie.  She slept for most of the zoo visit, trying to catch up on rest after another rough night (in spite of her new medication to help her sleep, which has been a serious problem since around June).  I took some pictures to show her later.  She woke up towards the end and seemed to enjoy meeting some of the animals she's heard so much about!

Below are some pictures of Caroline with elephants, giraffes, lions, porcupines, lemurs, chimps, and a polar bear!

Scooting and moving!

Caroline has recently learned an exciting new skill--she's scooting to move forward! This is huge for Caroline because it's the only way she is able to move around on her own. And she absolutely loves it! 

In terms of motor skills, Caroline didn't lose much with regression.  She was never able to crawl, stand on her own, or walk.  She rolled and rolled to get to places, which she still does once in a while.  One major loss was her ability to reach to her sides to get a toy, but she's mostly made consistent (albeit slowly) progress with a lot of HARD work on her part! 

I took this video this evening when she got home from school!  She scooted from one side of the kitchen to the other in about 2 minutes.  I tried to get her to do it again and captured the video below.  

2011 Rett Syndrome Strollathon

Today we participated in annual the Rett Syndrome Strollathon, an event to raise money to provide funds for research to greatly improve the quality of life for those affected by Rett syndrome.  

We loved meeting so many sweet girls and being with other families. Emma, Caroline's friend from school, and her family also joined us which was incredibly touching.

We don't walk alone!

Below are pictures from the event

A public service announcement in honor of Rett Syndrome awareness month

Girl Power 2 Cure raises funds that are granted to the Rett Syndrome Research Trust.

 

I can't deny that the video is difficult for me to watch. It brings back those "whys" and "what ifs" questions that I hate asking myself (though I find that this is becoming more of a rare thing lately). Yet the video really does give an insight as to how Rett Syndrome affects girls like Caroline.

I believe that Caroline can still have a rich and happy life, even if she's not a "typical" girl. I look at her and all I see is a sweet, engaged, funny, and sometimes even feisty little kid.  She may not be able to talk, but she sure knows how to draw people in with her charm!  Although it's hard to see her struggle so much, Caroline is perfect to us.  My wish is for her to always be treated with dignity, respect, and compassion.

I still hold hope that all the great research done by the Rett Syndrome Research Trust and the International Rett Syndrome Foundation will lead to amazing advances in medicine that will drastically improve the quality of life for our girls. 

Fun weekend with friends!

Caroline had a busy weekend including playdates with Ethan and Daisy, and a party for her friend Malia's 2nd birthday. Caroline absolutely LOVES being around her friends! And we, in turn, got to spend time with their parents (all dear friends of ours). Caroline has had regular playdates with Ethan and Daisy since there were all very little. It's been great watching their friendships grow over time. I am always moved by the special bond and the sweetness these babies share.   

Here is a video (and some pictures) of her playdate with Ethan Friday evening

And more adorable video/pictures from her playdate with Daisy earlier today

Garden of Hope Project for Girl Power 2 Cure Gala

The Capitol Hill Arts Workshop hosted an event to raise awareness for Rett Syndrome and the Girl Power 2 Cure Gala that took place on September 23rd, 2011. Visitors to the CHAW event created a flower-inspired art piece under the direction of one of their artists. Someone named Alexie picked Caroline's picture and created an art especially for her! The art was displayed at the Gala and was mailed to us this past week.  We are honored that Caroline was part of this wonderful project.   

Below picture taken by Kat Forder.  For more pictures of the event, please click here. 

We weren't able to attend the Gala this year because we were on vacation. My fellow Rett mommy Beth took this close up picture for us.

Happy Caroline :-)

It's hard to get down around Caroline. Here's why :-)

Playing Peek-a-boo!

Our Little Foodie

Caroline continues to struggle with chewing. Swallowing doesn't seem to be a serious problem, except with fast flow sippy cups, which we no longer use because of issues with choking and aspiration of liquid into her lungs.  We went back to infant bottles after working for a few months to phase them out. 

Unless we basically liquify all solid foods, most of it spills right out of her mouth. We've been blending everything from strawberries to chicken for a couple of months now. The downside to blending her food is that she doesn't get to practice proper chewing skills. We still offer her food that is cut into small pieces, but again, very little actually stays in her mouth.

On a funnier note, Caroline is very particular about when and what she eats for dinner.  She's always ready for dinner right at 5:30pm, no matter what. Even at 5:40pm, she can go from happy to upset and starving in just a few seconds.  Also, what's fine for lunch is not okay for dinner.  She wants protein, preferably warm and in the form of some kind of meat!  If I give her a sandwich, she'll seal her lips or spit out the food, and fuss.

Our little social butterfly still gets to enjoy going to restaurants! We just order food for her that is easy to chew and/or mash it as best we can. 

Caroline having brunch with us

Below is a hummus and cheese sandwich!