Friday, March 23, 2012

Cora's Kaleidoscope

Today Cora decided to show us that she is learning her colors.

While reading one of my favorite books, Good Night Sweet Butterflies, she decided to show me that she could point to the colored butterflies on demand.  At first I would point out all the other things of the same color on the page, ie. "purple pansies, purple dragonfly" and then when I would say "purple butterfly" she would point to the purple butterfly.  And so on.

She does have a leg up, since she can see what color the page is focusing on and can see lots of other examples of that color before choosing her butterfly.  But even that shows that she is able to match colors.

But on each page, she'd point out the butterfly of that color.

When I enlisted Nick to help so I could take some pictures, Cora immediately pointed to the butterfly the second he'd turn the page, turning around to grin at us, kick her legs and express her glee.

 Quite the sight to behold.

My little munchkin is so clever.

Yellow, green, blue, purple, orange, pink, red, gold and white.  

Thursday, March 22, 2012

This Little Bean of Mine

I realize that I haven't been posting many updates on the skills and accomplishments of my little girlie.  This has been brought to my attention by the number of questions I get from my parents, and the word-of-mouth sharing that's going on.

But Cora has been kicking some serious butt lately.  Her cognitive developments just keep coming.  When it rains it pours, I guess.

I mentioned a couple of weeks ago that she had started signing.  She is definitely keeping it up.  Although she doesn't really like to sign on command, she does sign appropriately, and sometimes secretively.  On several occasions I've caught glimpses of her in her car seat, practicing all her signs and staring intently at her hand.  This is so impressive to me, mostly because she's always been so interested in doing things with my hands, but not with her own.  So it's pretty great that she uses her hand to sign.  She signs "milk", "more", "all done", "Daddy" and waves bye-bye.  And it's obvious that she understands many more than that, but isn't quite ready to do them.  When I sign to her, she gives me the biggest smiles.

She is also pointing (with my finger) to a lot of body parts, both on me and on her, and on her Body Book.  When prompted, she'll point out all the different facial features on the two of us and on the various babies in her book.  Last week, after being introduced to the song "Head, Shoulders, Knees and Toes" a few times, she opened her book and pointed to the baby's head, then shoulders, then knees, then toes.  Repeatedly.  Obviously asking me to sing it to her.  So I obliged.  She also knows the motions to all her favorites songs (some are legitimate, some I make up, some are signs.)  She will move my hands into position to tell me what she wants to sing.

It seems that she is recognizing pictures in her books, based on where she looks and points when we read.  She is also really enjoying her BrillKids Little Reader program and is paying attention very well, which she didn't do initially.

She is starting to follow simple directions.  She is improving her eating skills.  She is vocalizing a lot and says "Hi Da" at appropriate times (although she calls me "da" too!)

But this girlie does NOT like gross motor play.  Or moving.  Much at all.  Stubborn, much?

"Mum!  Get me off my tummy!"

She took some steps backward after her surgery and recovery, and now it's serious work to get her to army crawl 2 feet, whereas before she would army crawl across the room.  She is still very resistant to bending her knees (which prevents her from 4-point crawling, kneeling, pulling to stand except from bench sitting, climbing stairs, moving into and out of a sitting-position, etc.)  So we're working on that.  She has earned the nickname "Lumpy" from my family, since she is perfectly content to sit still and be catered to.

"Hmmmm... if I look at this long enough, maybe it'll roll into my hands..."

But the good news is that she's pushing all the way up on her arms more, so she's building back her upper body strength, and she is not locking her knees when she stands now.  This actually makes her more unstable, but bodes well for a future of knee bending and possibly moving onto other milestones.

As for sleeping, well, I've been hesitant to post much, since it's still evolving and I don't want to jinx anything.  I will say that she is breathing better post T&A.  She isn't having episodes of apnea that I can tell, which is great.  She does still snore occasionally.  But she's still waking.  Some nights are better than others.  She's been whining in her sleep lately (teething, maybe?), so we'll see.  So far, not a great deal much more sleep for the weary folks in my house, but we're still working on it.

So that's it for the State of the Bean in my house.  She is excelling in the CUTENESS department, for sure.

Tuesday, March 20, 2012

World Down Syndrome Day

March 21st is World Down Syndrome Day.   A date chosen to honor, celebrate and raise awareness for individuals with Trisomy 21. 

Last year was the first time I had ever given World Down Syndrome Day a thought.  1 year ago I wrote Cora's birth story, just 9 weeks after I’d ever had much cause to think about Down syndrome at all.  9 weeks after her arrival into my life changed everything.  9 weeks after I had discovered something that I now feel was always destined to be a part of my life.  Something that seemed to fill in the gaps in my life and give me purpose that I realized I had been seeking.

Sometimes I wonder how it is that I was so unaware in the past.  How is it that I had never known someone with Ds, that I don’t remember knowing any children with Ds growing up, that I barely remember even seeing anyone with Ds?   I had to have.  I knew what Ds was on the most general level, but I had never really thought much about it. 

And now, of course, it is everywhere.  Yes, I do seek it out.   I love to be involved with our local group, the Northwest Down Syndrome Association.  I love to read the blogs of other parents with children with Ds.  I love to get together with the handful of local friends we’ve made, linked by our love for someone with an extra 21st chromosome.  Yes, now I see Down syndrome.  It made my day last week when Cora and I ran into a beautiful little 6 year old girl and her mama.  I looked at her daughter and smiled.  Perhaps her mother wondered why until she looked at Cora and I saw that little spark of recognition.  We both smiled and talked about swimming before they scampered off to the pool while Cora and I got dressed. 

Now I get caught up in stories about Ds in the news, thoughts about education and inclusion, and worries about what the new prenatal testing will do to our communities and to our society.  I am both heartbroken and encouraged by the stories of abandoned children in other countries seeking homes with new forever families.

It may seem odd to suddenly find myself a part of a family that I had never acknowledged or recognized before.  A family consisting of so many backgrounds, faiths, beliefs and stories.  A family that most of us didn’t know we were looking for.

I think that the thing that I am learning since Cora entered my life is how important people with Ds are in the world.  Because it really does seem that there is something bewitching about so many people with 3 copies of the 21st chromosome.  I know how offensive platitudes about “special” people can be, yet underneath the annoyance I find myself wondering what it is about that extra chromosome that adds something indescribably compelling.  My own exploration of this is admittedly limited, since my daughter is only 14 months old.  But she has something that undoubtedly draws people in, that makes them smile, and that captures hearts.   

As my wise sister Mira has told me, she thinks that that enigmatic quality is really Cora’s survival mechanism and her gift to the world; that her charisma contains something that other typical kids don’t really have.  Perhaps it’s something impossible to put a finger on, yet equally impossible not to recognize.  These are sentiments that I’ve heard echoed many times over by others as they describe their loved ones with Ds.  That there is just something more, something mysterious that enriches lives, compels deeper love, teaches a truer understanding of what is important in life, brings one closer to their true self.  

What is this quality?  As a relative newbie I’m not really qualified to answer that.  But I am certainly excited to watch it unravel in my own life, as I witness Cora maneuver her way through milestones big and small, drawing others in as she goes, leading my own heart on a string.  And I am blessed to be surrounded by so much inspiration and so much joy in this community we’re lucky enough to share.

Join the blog hop for 3/21 by visiting With A Little Moxie or My Stubborn Little Miss to check out other great posts today.

Sunday, March 18, 2012

Flashback- The Unbearable Cuteness of Bean

I've been out of touch the last few days, up visiting family.  We've been relaxing, cooking and laughing, and forgetting to take pictures or open a computer.

But I've been thinking about this video.  This sweet little 4 month old Cora Bean.  Oh so tiny and sweet, with her bobbing little head and soft little cheeks.  Looking at old baby videos recently has been tickling my fancy.

So I thought you might like another peek too.  My little Sweetie Bean!

Monday, March 12, 2012

Raining Cats and Dogs

Today it is rainy and it is cold.  I keep seeing other blogs that show families frolicking in the sun, playing in the grass, even out in swimsuits. 

Not us.  We are stuck inside.  What's more, I don't have a car today, so a trip to the library story time and even the grocery store is out.

So I thought I'd give Cora the chance to make a mess and create a masterpiece.

Perhaps I'm biased, but I think she's quite the artiste.

Plus she looks great in blue.

And red.

Why, just look at the fruits of her labor!

See, she's proud!

But an easy clean-up it was not.  I approached her with a baby wipe or two and quickly realized that was laughable.  So I had to grab her from behind and plop her in the tub.  You may wonder why her bathtub is a catering bus tub.  Well, let's just say it comes in pretty handy with a child who seems to like to go #2 only in the bathtub.  Ahem.  Makes for easier clean-up.  And it gives her practice sitting up in the water.  Fancy baby gear from Cash and Carry.

Luckily Cora is quite washable.

But Melissa and Doug's washable finger paints did NOT remove well from the high chair tray. 

Guess I'll keep scrubbing.

Sunday, March 11, 2012

No She is NOT "Downs"

If you are part of the community of families who love someone with Ds, you've no doubt heard all kinds of misdirected comments about your child, many of them from medical professionals.  And very likely, even when your child is healthy there are still many reasons to visit doctors and specialists.  Cue the comments about "Down's kids", how "they" all are, and sometimes you even hear some doozies that really hurt. 

When Cora was in the hospital we had a nurse that really raised my hackles.  Close to jumping up and defending my daughter from what I am sure was just careless phrasing, I decided instead to take the opportunity to try and educate, and just sent off a letter to the pediatric director at the hospital.  I have no idea if it will even be read very closely, or if it will make any kind of difference.  But I would love to do my part to help raise awareness, a little bit at a time.

Here's a peak at my letter.

Dear Director:

My daughter was recently admitted to your hospital. What began as a routine tonsillectomy and adenoidectomy for a 13 month old ended as a readmission for dehydration, subsequent respiratory distress and a PICU stay for aspiration pneumonia secondary to swelling. It was a very stressful experience, but we are very grateful that our daughter experienced excellent care during this health crisis and is recovering very well.

My intention in writing this letter, however, is to share something with your staff that is very important to me. After my daughter was diagnosed with Down syndrome shortly after birth, I learned of the importance of using people-first language. This means referring to an individual as a person first and their disability or diagnosis second. My daughter would simply be referred to as a “child with Down syndrome” rather than a “Down’s child” or “a Downs.”

One recent experience has stood out for me, although it was not the first or last time a health care professional has used this type of language. Upon readmission, Cora’s nurse commented with surprise, “Oh! She’s Downs.” I could not understand the medical relevance of that remark and it was so hurtful perhaps because there did not seem to be medical relevance. The defensiveness I immediately felt unfortunately lingered throughout our stay. These types of statements are dehumanizing and imply that my daughter is simply the sum of her diagnosis, rather than a valuable and cherished member of our family.

Moreover, the correct terminology is Down syndrome or Ds and is not Down’s. While it may seem like a small detail, using the correct medical terminology is important, especially when used in a medical setting by medical professionals.

In the relatively short period of Cora’s life we have learned much about the stereotypes faced by people with Down syndrome. While we are aware that her diagnosis has had an impact on her health, she is a vibrant and healthy girl. She does not “suffer” from Down syndrome and she certainly does not fulfill all the stereotypes about people with Ds, neither socially nor medically.

Even so, we know that she will likely need additional medical care in the future and we intend for her to continue as a patient at Randall Children's Hospital. Your hospital has cared for her in the NICU, during her successful open heart surgery and during her recent stay. We are grateful for the wonderful care she has received.

But we would love to be able to play a role in making the environment at your hospital just a little more hospitable toward individuals with disabilities and their families. I would be honored if you would allow this letter to be shared with your staff or to be used as the impetus for training in people-first language.

Thank you Grammi for the adorable new onesie and headband!

Wednesday, March 7, 2012

Just Don't Use It

Today I ask you to "Spread the Word to End the Word."  This is a campaign to end the use of the words "retarded" and "retard" as slang.

Because even if you "don't mean it like that", there is no doubt that these words originated from speaking about individuals with cognitive disabilities.  People like Cora.  But now it has evolved to refer to anything that we want to call stupid, dumb, worthless, or vile.  And that hurts.

Even the medical community is using this phrase less and less frequently, aware that its use as slang has made it offensive.  It is now considered a disability slur, a hate word.

So take a few minutes to think about how using this word would make a mother like me feel.  How it would make anyone who loves someone with an intellectual disability feel.  How it will one day make Cora feel.   Even if you think that this is an issue of being "over sensitive", it's really just a matter of respect. 

So take the challenge today and make the pledge.  Pledge to Spread the Word to End the Word and stop using the words "retarded" and "retard."

Tuesday, March 6, 2012

These Baby Blues

These baby blues... this little face... have wound their way around my heart.

Sunday, March 4, 2012

Baby Bunny

Cora had her Early Intervention evaluation on Friday, so we updated her teacher and therapists on her progress on several levels and set new goals for the next year.

She was there during the evaluation, sitting on the floor playing with the speech therapist, while we tallied up the things she has been doing and the things she has not.

So, of course, this weekend she has decided it's time to start doing several new things.  Of course. 

She has been signing for sure now.  She signs "milk" often while nursing, but not always on demand.  She is signing "all done" every time she finishes a bite of food and every time I ask her if she's done.  And just today (after increased efforts on my part to use it consistently) she started signing "more!" 

A few times today we've noticed her sitting and practicing her signs, running through all three of them.  It kills me with how freaking adorable that is!  I am so proud of her.

But the favorite new thing she did today is still running through my head, making me giggle every time I think of it.  While reading Runaway Bunny for maybe the third time today, each time we'd look at the illustrations, I would use my finger and point several times to the "mama bunny" and "baby bunny" on each page.  I typically do this when I read the story.  But I decided to add something else this time, so after pointing to the bunnies, I would point to myself and say "mama" and touch Cora's chest and say "baby." 

Then I decided to see if she would replicate any of this.  She isn't really interested in pointing to things or doing motions on her own (although Nick DID witness her clapping on command today!), so in true Cora fashion she used my finger to point when prompted.  This time when I said "mama bunny" she grabbed my finger and touched the mama bunny picture.  Then when I said "baby bunny" she grabbed my finger and touched it to her OWN FOREHEAD!  And repeated it several times in succession, and again a couple hours later when I said "baby bunny" when not even reading the book.  My sweet little girl thinks she is the baby bunny!!!

This just kills me with the sweet adorable cuteness of it all.  It also excites me, knowing that she is becoming more and more able to convey her understanding and to express herself.  It also shows me that she is understanding a lot more than what she can express (even if she refers to herself as a baby bunny...).  I'm just so happy about it all.

So excited to see my girl growing and developing.  So so proud.

"Look at this Mum!"  Cora is showing off the onesie designed by Grammi along with Auntie Mira's legwarmers.

"A Secret Garden for Cora" quilt, made for her birthday by our lovely friend Daniel.

Thursday, March 1, 2012

Getting Ready for Bed

A video, as requested by Favorite Auntie Mira.  Perhaps not the best resolution, but still showing some Beanie love.