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.

Monday, November 28, 2011

In the spirit of Thanksgiving

Six months ago, I never thought I would feel as thankful and blessed as I do today. We are grateful for a number of things this year.

I am grateful for my new perspective on life, which allows me recognize and celebrate the sweet moments. "Little" things--like hearing Caroline say "mama" or watching her laugh in delight at something she enjoys--mean the world to us. We now cherish her milestones with greater pride.

We would not have been able to get through this year without the help and support of parents, both in terms of our physical and mental health. They give Caroline unconditional love, they sacrifice their own sleep so that we can get some ourselves, and they make sure we never feel that we are alone in all of this. My mother-in-law makes a long drive to visit us nearly every Monday. In addition to having a fun afternoon of just enjoying Caroline, laughing and sharing stories, we also get some sleep at night. She helped restore a sense of "normalcy" in our lives earlier this month when she looked after Caroline for a few days while Mike and I took a much needed vacation on our own. My mother also makes trips to stay with us every other weekend, which has been incredibly helpful on so many levels. And Caroline ADORES her grandmothers. The look on her face whenever we let her know that one of them is coming to visit is priceless.

I've been meaning to express my gratitude to all the moms I've met since Caroline's diagnosis. The first couple of months were heart wrenching and terrifying. That fear quickly subsided, in large part because of all the families who reached out to us. They are generous with their support and advice on things ranging from arm braces and sleep coping.  I felt an instant connection to them and cannot imagine taking this road without our community of families. We give each other support when our girls struggle and we celebrate their accomplishments together!

I am also thankful for our friends and family. They were there during those difficult diagnosis days and never stopped encouraging us. They approach spending time with Caroline like any other child (which means a lot to us), appreciating her for the funny, smart, and charming little person she is.

We are grateful to all of Caroline's doctors, therapists, and teachers for taking the time to understand Rett and also for seeing beyond it. I appreciate their kindness and commitment to keeping her healthy and helping her continue to make progress in all areas of development.

And thank you for caring and taking the time to read about Caroline's journey on this blog.  I am moved by your encouraging comments every day. 

Mike and Caroline decorated our Christmas tree last night.  We got a small (but beautiful!) one for Caroline this year.  She stared, sang, and babbled at the tree for the longest time.

Saturday, November 26, 2011

Thanksgiving Day at Auntie Min's

My sister Min and her husband Jon threw their very first Thanksgiving dinner this year. The food was amazing and the company was awesome.  We had a wonderful time!  My sister, Jon, and my mom really went out of their way to make us feel loved and to help us forget about some of the difficulty and sadness we've been experiencing because of Rett lately.  We got tons of rest and sleep, ate a LOT of delicious comfort food, and stayed up late talking, watching movies, and laughing. 

Caroline had a blast.  She got spoiled with attention and love from many family members and friends.  Some friends even made special visits just to spend time with her!  Everybody celebrated her sweet personality and all the things she is able to do.  And Caroline totally enjoyed the attention.  She babbled non-stop, giggled, and performed for all of us!

Below are some highlights from our trip.

Caroline enjoyed reading and learning with Abu and Tia Min!

Caroline looks a LOT like her Auntie!  (loving the Pug T-shirts!)

Min made Caroline some delicious and nutritious soups to take home.  Caroline LOVES her Auntie's gourmet cooking!

Tuesday, November 22, 2011

Tipping point

Something has become clear over the last couple of weeks...we need help. Specifically, we need regular overnight help a few times a week so that we can get some rest and function during the day. The wonderful folks at Early Intervention services told us about the Elderly and Disabled Consumer Directed Waiver, which would provide us with some hours of personal assistance and respite care each month.

We were initially reluctant to take advantage of this benefit, but we've officially hit bottom. We are not sure (nor do we want to imagine) where we would be without our mothers' help right now.  Our moms live 75 minutes and 3 hours away, but they have been making specific trips to help us get some sleep at night. Those couple of nights give us enough rest to help us make it through the week.  We feel guilty putting this burden on our parents.  And I struggle with that a lot.  But our moms do it with such devotion and love.

More importantly, we also need to soon find a solution to help Caroline get the precious hours of sleep she requires as a healthy and developing 22-month-old.  She is hyper and restless for nearly the entire night sometimes.  Her body won't let her relax.  She has continuous involuntary spastic/jerky movements of her arms and legs.  Earlier this fall, we came to terms with the fact that we needed to resort to medication to help Caroline sleep.  That was a hard decision for us to make, but sleep deprivation compromises various aspects of her health and development.  We started with melatonin and we are now exploring prescription medication. So far, we have not found something that works for her but we have hope that we will soon.  Also, I've been encouraged by so many families who have found solutions for their daughters and have told me that our girls eventually grow out of this terrible insomnia.

The stress, anxiety, and exhaustion has taken a toll of us, but Caroline is so incredibly sweet and loving...and that makes a world of difference!   

Wednesday, November 16, 2011

Caroline said Kroeber's name!

When I got home from work on Tuesday, Mike shared something amazing that happened a little before I arrived.  He was talking to Kroeber and out of nowhere, Caroline said "Kouh-BA!"  She tried to say his name about 2 weeks ago as well.  We were working on her walking skills before school and when we approached Kroeber, she stopped, looked straight at him and went "Kuh! Kuh!" It took me a second to realize she was trying to say his name! 

Caroline and Kroeber have a special bond.  Every morning, he waits by her door to check in on her.  Once he sees her awake, he goes downstairs and does his own thing.  As a side note, the fact that Kroeber is alive is a miracle.  When I was 6 months pregnant, we found out Kroeber had splenic hemangiosarcoma.  We were told he had 1 month to live...maybe 3-4 months if he was lucky.  We were devastated and wondered if he would at least get to meet Caroline.  We never thought we'd get to see Kroeber and Caroline interacting this way!

Caroline saying Kroeber's name is exciting on so many levels.  As I've written about many times before, the Regression Stage took her words and her ability to vocalize most sounds.  The "K" sound is especially difficult for her.  The fact that she's able to overcome some of the difficult challenges caused by her apraxia and actually "spit out" a word is something worth celebrating.  I also think it's adorable that he holds a special place in her heart.  

With Rett, it's hard to predict what's next but our hopes are high.  From day one, we decided that we would never let her diagnosis limit our expectations around her potential.  Only Caroline will be able to tell us how her story unfolds. 

The video below was taken when Caroline was 12 months (my little baby!).  This is a typical scenario of Caroline laughing at Kroeber doing something goofy :-) 

Monday, November 14, 2011

Speech Therapy

Caroline has been working with Ms. D, an early developmental specialist, since January 2011. Our sessions are focused on speech, communication, oral motor skills, fine motor skills, and play. 

Caroline has great attention span and is very engaged.  She loves these sessions and really performs for her teacher! 

Here is a video from today's session (focused on speech)

Saturday, November 12, 2011

Sleep disruption

One of the most challenging aspects of Rett Syndrome for us has been the serious sleep disruption we have experienced over the last 5 months or so.  The lack of sleep is tough on all of us.  On the worst nights (which seem to occur 2-3 times a week), Caroline wakes up frequently and is up anywhere from 3-5 hours straight.  She is hyper and has non-stop jerky body movements that won't let her relax.  We've been trying a combination of melatonin and prescription medication, but we haven't found a solution yet.  We also use a weighted stuffed animal for her legs.  Sometimes, we have to hug her body tight for a while to help her relax until she falls asleep.  We never know when we're in for a long night, which adds to the stress and anxiety.

A few times a month, our parents spend the night and take over to give us a break, which has been tremendously helpful.  We don't know if this sleeping issue is temporary or permanent, but we are desperate to find a safe and sustainable solution.  We would do anything for Caroline, but sometimes, Rett really takes a toll on us.

Caroline and I wore matching braids today


Caroline adores her "da"

Caroline rarely complains when Mike combs her hair (one of the very few times I get some serious attitude from her!)

Tuesday, November 8, 2011

Saying "mama" again

Before the Regression stage, Caroline could say about 15 words.  She began saying words very early and pretty clearly for her age.  Speech loss for Caroline began around 14 months.  At first, she had trouble saying her words.  That quickly turned into struggling to even babble.  She went months barely ever vocalizing. 

In the last couple of months, her babbling has not only returned, but she even attempts to repeat most words during speech therapy!  She usually gets the general sound or maybe the first letter, but we celebrate every single attempt as a huge success!  Every once in a while, we'll actually hear Caroline say a word perfectly. 

For several months, we missed hearing "mama" and "dada," but those two precious words have returned.  They don't sound like they used to, but they are awesome to us.  For "mama," she sometimes says the full word, but often, she just sticks to something that sounds like "mum" or "ma."  And it's clear that she means she wants me!  When I get home from work, she sometimes yells "Ma" in excitement!  Also, she now calls her daddy "da" or "baba."

We don't know what the future holds, but for now, we're enjoying hearing her adorable little voice!

Here's a video from yesterday of Caroline repeating "mama" :-)

Here's a video of Caroline at 5 1/2 months saying "mama" for the first time!

Monday, October 31, 2011

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)

Sunday, October 30, 2011

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!

Saturday, October 29, 2011

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 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!

Saturday, October 22, 2011

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!

Friday, October 21, 2011

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.  

Sunday, October 16, 2011

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

Friday, October 14, 2011

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. 

Sunday, October 9, 2011

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