Saturday, December 31, 2011

Happy New Year!

As 2011 comes to an end, I wish everyone a better, healthier, brighter, and more peaceful 2012.

Below are pictures representing hope for Caroline's future.  It's been nearly a year since Caroline has purposely grabbed her legs like this!   

Tuesday, December 27, 2011

Merry Christmas!

Caroline really enjoyed Christmas this year. She got to do what she loves the most--hang out with her favorite people!  We changed our travel plans after Caroline got sick on Christmas Eve, but everything worked out in the end. We celebrated Christmas with both sides of our family over the course of a few days.

Despite my initial feelings around this holiday, we all had a wonderful time.  We got to spend some quality time with our families, and Caroline was so happy from all the love and affection!

Below are some pictures and videos of Caroline opening and enjoying her presents. (somebody got spoiled this year!)

NOTE: The videos below may be easier to watch directly on Youtube by clicking on the "YouTube" icon located on the bottom right corner of each video.   

Caroline opening gifts from Santa Claus


Caroline playing with presents she received

Auntie Em and Mr. Drew gave Caroline an awesome riding toy. "Rody" is going to help Caroline do some physical therapy on her core in a fun way!
Grandmom gave Caroline gloves and Letter Blocks with velcro (that she glued) to enable Caroline to hold them on her own.
Auntie Min gave Caroline an interactive Puppy that we programmed to say her name, talk about her favorite foods and things, and play her favorite songs!
Daddy got a Kindle Fire from Uncle Andy.  Daddy already added a few fun and educational applications to enjoy with Caroline :-)

Sunday, December 18, 2011

Caroline's cognitive development

These videos were taken this past week. The first one gives a glimpse of how Caroline communicates with her eyes. She loves learning and gets excited when she is able to show us what she knows!  Rett Syndrome prevents Caroline's brain from properly communicating motor function (including speech and movement).  Apraxia is not an indication of cognitive ability.  Our society seems conditioned to underestimate the intellect of a person who cannot speak, move their body, or use their hands.  Children (and adults) with severe disabilities such as Caroline's often get treated like they are much younger than they are or don't understand what is going on around them.  Caroline understands everything we tell her.  She's also quite perceptive.

This is a video of Caroline working hard on reaching and touching her toys. The arm braces have made a dramatic difference in increasing functional use of her hands (please click here if you'd like to read a previous post about Rett and limited hand use).  Purposeful hand use is challenging for Caroline.  It seems the more she thinks about wanting to do something, the more difficult it becomes.  However, she will rub her eyes if they itch or push my hand away if I'm doing something she dislikes (like wiping her nose!), as she doesn't have to think much about those immediate reactions. 

Saturday, December 17, 2011

Getting into the Holiday Spirit

I've been privately struggling with the upcoming holidays. This will be our first Christmas since Caroline got diagnosed with Rett Syndrome. 

I'm not sure what it is about the holidays...perhaps there are too many layers to pinpoint to a specific thing.  I think part of my sadness is reflecting back on all that was lost since last Christmas.  But there have been blessings also.  Caroline is pure sunshine and love.  It's hard to be sad around her. 

Mike has always been the one to get us in the holiday spirit, and this year is no exception.  He plays Christmas music every night.  He decorates the house and the Christmas tree.  We regularly bake cookies.  He remembers to get us to watch A Charlie Brown Christmas (this year will be our 9th time watching it together!).  And Caroline is totally loving every second of it! 

Mike and Caroline watching A Charlie Brown Christmas

Caroline loves her little Christmas Tree

Sunday, December 11, 2011

Caroline is starting to sleep again (sorta)

We seem to be on our way to solving Caroline's sleeping problems, thanks to the commitment of Caroline's neurologist and advice from other moms. Keeping our fingers crossed...

We started her new medication almost 2 weeks ago and I'm pleased to share that things have improved (after figuring out the appropriate dosage). Sleeping is still far from perfect, but at least Caroline is no longer staying up for a good chunk of the night. She is stronger and more alert during the day. And we grateful to be getting a bit more rest on a regular basis too. It's amazing how sleep deprivation can really take a toll on your health after a while.

On a sweet note, Caroline has been all about her "da" (or "baba") lately. She yells for him to come back every time he leaves the room. She'll lean over and keep looking in the direction he walked away while yelling "Ba-BA!" It's pretty funny...and totally cute! Below are a couple of pictures from this past week.   

Caroline wearing a Jayhawks T-shirt daddy got for her
Caroline wearing the new doggy slippers daddy picked out (yes, those are tails on the back!)

Wednesday, December 7, 2011

What would Caroline say?

I wonder what Caroline would say to me if she could speak. I daydream about having conversations with her all the time.

In my "daydreams," she is often about 4 or 5 years old at least...the age I'd imagine her to speak like a little grown up almost. I don't think about these scenarios with sadness, but rather with hope and excitement. I consider myself to be an optimistic person, but I am also realistic and pragmatic in my expectations. And I do feel that communication is very much within our reach.

Figuring out a method of communication would first take care of some basic needs. We've gotten pretty good at knowing when she's hungry or tired. However, Caroline is unable to point so it's difficult to tell if something hurts. She sometimes gets sad and babbles in distress while looking directly at us. It's obvious she has something important to tell us. We do our best to figure out what's wrong, but it's hard to see that she desperately wants to say something but can't. Still, for all the challenges she faces, Caroline is already showing us how patient she is at just 22 months.

We know that Caroline has plenty to say. Her recent Early Intervention assessment evaluated her cognitive and receptive language skills as being on target for her age. The evaluation also showed that she has the social-emotional development of a 36-month-old. Caroline is very expressive and communicates with her eyes...I've learned that great joy and meaningful moments can be exchanged without the use of words. But I can't help but wonder what her words would reveal about her. Based on Caroline's personality, I picture the following. I imagine that she would have a dry and witty sense of humor, but never use sarcasm to hurt or undermine others. I think she would be assertive and confident, but never condescending. I suspect she would have a ton of questions about all sorts of things. I believe the ability to communicate her exact thoughts would be incredibly liberating to her. And nobody would underestimate her intelligence simply because she can't speak and requires assistance with basic daily life needs. When I close my eyes, I can clearly see all these things.

A few moms shared the following video on facebook. Kathrin Lemler is using an eye-gaze computer called MyTobii.  This is an option we hope to explore for Caroline in the next couple of years.