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!