Cute Has a Way of Shining Through

A couple of weeks ago we had a fun opportunity for a Valentine's Day photo shoot with Megan at Owl's Eye Photography.  We had a session with Megan when Miss Cora was 9 months old, just days after she learned how to sit up independently.  What a pretty little baldy girl she was.

We've actually been waiting for warmer weather to schedule our next session, since the Portland rainy season stole our opportunities last fall.  And then Megan held a giveaway for a mini-session.  I entered, with a feeling that our name would be drawn.

And lo and behold.... we won!

The shoot was brief with Cora happy for only about 5 minutes of the whole thing, and crying the rest.  But cute sure has a way of shining through.

Here are my favorites.  Thank you, Megan, for the beautiful photos of my favorite girl!

 

 

Congenital Heart Defect Awareness Week

Before Cora was born, heart defects were not something I thought much about.  A few years ago, a friend's new baby had open heart surgery with success, but it still felt like something that hadn't touched me personally.  All that changed when we were told that the reason our one day old baby was turning blue was because she had a serious heart defect that would require open heart surgery between 2 and 4 months of age.

Cora had a complete atrioventricular canal defect, which is one of the most common heart defects in babies with Down syndrome.

Research shows that without surgery, only 4% of children with complete AVSD (or complete AV canal defects) survive beyond 5 years.  In Cora's case, I sincerely doubt she would have survived to four months old.  She was in serious heart failure at the time of her surgery at 11-1/2 weeks old.

Of all the blessings in my life, I am most grateful for Cora's successful heart surgery.  Without surgery she would have had no chance at a life. 

Congenital heart defects are the most common types of birth defects.  Almost 40,000 babies are born with CHDs in the United States each year.  For children with Down syndrome, the incidence is much higher than the typical population.  Current information shows that approximately 40-60% of babies with Down syndrome have a heart defect.  About 35% of these children have AV canal defects like Cora.  Some of the more minor defects will repair themselves without surgery, but many require surgery.

Knowing that your tiny baby will have open heart surgery is something that no one wishes for their family.  In fact, many decisions to terminate pregnancies with a prenatal diagnosis of Down syndrome are due to the presence of a heart defect.  But as I have learned, the prognosis for children with Ds and a heart defect is very good.  Most defects can be successfully repaired surgically or resolve on their own in time.  Although stressful and painful, a diagnosis of Down syndrome and a heart defect is not as dire as it once was.

Since Cora was born, I have been in touch with so many other families whose children have undergone open heart surgery.  Some of them feel almost like family.  Many of their stories helped me as I prepared for Cora's surgery, and they inspired me to do the same for other families down the road.  I began to compile a list of blogs, stories and advice written by other parents of children with Down syndrome who have had surgery.  I only hope that our story and the stories of other families like ours can continue to help others who will go through this experience in the future.

If you would like to share your family's story about Down syndrome and open heart surgery or congenital heart defects on this blog, I would be honored to post it here.

Having a Baby to Benefit my Child with Down Syndrome?

The past few days I have been obsessing over the question of whether to try for another baby.  Stressing and obsessing, having dreams about taking pregnancy tests and going into labor.

I just don't know if I want to have another child.

While planning for children, I always said I wanted two, so my kids would have a sibling. My sisters are my closest friends and the sibling relationship is so important to me.  Yet, in the back of my mind I was thinking.... "Well, maybe one would be enough for me."

After Cora was born I thought that of course we'd want another child.  Everything I heard and read discussed how beneficial it can be for a child with developmental delays to have a sibling. 

We originally discussed starting to try when Cora turned two years old.  I mean, if we do have another child I don't want them to be too far apart, and I am not getting any younger.  Well, Cora just turned two.  And after searching myself up and down for the past few weeks, I think the only conclusion I can come to is that I'm just not ready.

There are so many reasons I don't feel ready.  Most of those reasons can be waved away by parents who've been there and for whom it's turned out just fine.  She's not sleeping well and never has.  We are exhausted.  She is still quite dependent on nursing and I don't want her to rush to wean.  She is so, so attached to me.  I love the one-on-one time I have with her, helping build her interactive and social skills and taking her to activities on a whim. I love having the freedom to just focus on her.

I know that having a second child could be a great thing for her.  I see photos of other children with their siblings and then I start waffling again.

But what if it's not a great thing for her?  What if we have another child with even more significant needs than Cora has had?  What if we have a child that doesn't interact with her or who interacts negatively?  Perhaps that's not likely, but it could still happen.  What if we choose to have another child solely for Cora's benefit and it doesn't end up benefiting her?

There is always a lot of talk on the Down syndrome boards about having another child after the birth of a child with Down syndrome.  For some it's whether and for others it's when.  Many fear having another child with Ds.  Some want the opportunity to have a typically-developing child or to help eclipse some of the pain surrounding their child's birth.  Many more want to provide their child with a sibling.    I can understand all these things.  Part of me would like the experience of parenting a typical child.  Part of me wants to have a baby at home and not have to send her off to the NICU and watch her have open heart surgery.  And part of me would even like to have another child with Ds.

In my heart, I think I would be sad if Cora never had a sibling, regardless of Down syndrome and whether it will be good for her social, cognitive and physical development. 

But I don't think that having another baby just for Cora is a good enough reason.  It's something that my husband and I need to want for ourselves and for the whole family.

So for now I'm putting it on the back burner.  I hope that in time I will know what I really want.  I don't expect all my doubts and concerns to disappear, but if we do decide to have another child, I want it to be because it's what we all want.

How to Know?

Parents of young children with Ds these days are likely to hear just how much better the opportunities, expectations, and quality of life are for their children, as opposed to even 10 or 20 years ago.

This is attributed to better medical care, Early Intervention services, and largely, in my view, to inclusion.

Being counted in as a member of society is critical.  Being a student in a classroom with other typically-developing peers, participating in community events, being seen and heard... all these factors help to raise expectations for our children.  And our children are rising to meet many of these expectations all the time.

But like other parents, I often find myself wondering just how much to push and just how much to expect.  There is such a push to prepare for school, to make sure our children are in age-appropriate typical classroom settings.

I am starting to look at preschools.  I know she won't start for another year, but it suddenly feels like it'll be here before we know it.  Her Early Intervention team feels that she won't benefit much from the school district's special education preschool and that we should start looking for a typical preschool classroom for her.  The daunting prospect of putting her in school is already giving me butterflies in my stomach.

And the whole thing has gotten me thinking...

I'm looking at taking her back to the library story time events, since her naps are finally shifting enough to permit this.  And I wonder if I should take her to the 2-year old class or the 1 year-old class.  She just turned 2.  She's small.  She doesn't really talk.  She doesn't walk.  Heck, the last time we were in the 1-year old class (about a year ago), she was one of the very few non-walkers and the 1 year olds were doing some pretty impressive things (like following instructions and participating in activities.) Thinking of what the expectations for the big 2-year olds makes me nervous.  Would she be ready?

I guess the question I've been asking myself is whether I want to constantly push her beyond where she is developmentally and expect her to be with her same-age peers.

If we push her so much will there be room for her to be where she is?   

I want to value where she is now.  My perfect moments now are when I am on the floor with Cora, delighting in the things that she finds hilarious, watching her interact with her surroundings, seeing the sparkle in her eye as she discovers something new.  Sometimes I find myself losing sight of that beauty when I am too focused on her next steps.  I want to give us both time to enjoy where she is now, happy to move forward when she is ready.

If I am constantly looking to push her, does that mean that I am not accepting of where she is?  Does that mean that I don't think that where she is is good enough?  

Not long ago while playing with blocks she'd toss them around, maybe halfheartedly trying to stack one or two before knocking them over.  And I would wonder whether I should push her harder, knowing that one day soon she will be measured by her whether she can stack blocks.

But today I watched her meticulously try to stack her blocks for almost half an hour.  For the first time, she really tried.  She hasn't mastered the interlocking pieces quite yet, so she just tried balancing them on top of one another.  And then the little smartie tried some problem solving: she pushed them over to the couch so her tower could lean against it, allowing her to stack a little higher.  I looked on with such pride.  I felt such accomplishment for her, even though she hadn't quite mastered the skill.  And I realized that I really just needed to wait for her to be ready.

I don't know what it is that makes her ready.  Somehow turning 2 has been a bit of a turning point for her.  She is eating more, nursing less, self-feeding with utensils more easily, and suddenly willing to drink from a cup.  She finally seems interested in moving her body.  These steps that I have been worriedly waiting for her to take are now happening before my eyes.  I don't know why she is now ready for them, but she is.

So I will keep questioning myself I'm sure, hoping that I can make good choices.  I'll keep watching her, keep playing with her, and keep providing her opportunities to learn.  I will try to step back and let her try, even though I want to scoop her up and make everything easier.  I will continue to work on being patient, waiting for her to show me what makes her shine.

Cora and Kai's Birthday Bash Under the Sea

Cora and Kai's birthday weekend was brought to us by the signs "celebrate" and "rhinoceros."

"Celebrate" was obvious, since we celebrated the second birthdays that took place a couple of weeks ago.  And we celebrated the simple ability to reunite, since Erin and her family live all the way in Vermont.  It was a blast of sleep deprivation and way too much laughter.

"Rhino" may seem a bit less obvious, but it quickly became Cora's new obsession, as she couldn't pry herself away from the life-sized fiberglass rhino bust mounted on an exterior wall of my parents' house. Don't ask...  But it's actually really cool.

Instead of too many words, here is a photo blast from the past few days.

Not usually the type to get too into the decor... we broke our rules and created a little oasis under the sea.  The balloons and streamers were appreciated by the guests of honor.

We got a little silly with the food...

The most fun was putting together the fishy cupcakes the night before.  They didn't look quite as immaculate as the ones in the cupcake book... but made up for their lack of perfection in creativity.

Not surprisingly, Cora did not want to touch or eat her cupcake.  She did have a couple of icing-free M&Ms and some raw red bell pepper.

Kai gingerly took his fishy apart after 24 hours of eager anticipation.  He woke up Saturday morning yelling, "It's my Birthday party! Leah's cupcakes!  Downstairs!  Now!"  Anyone that knows Kai will know that these were the utterings of a crazed cupcake coveting boy and not his typical articulate and fully grammatical sentences.  Not like his earlier musings after being told that Cora is a toddler just like he is.  "Actually, Cora is a baby, not a toddler, Mira."

Cora the Bookworm was very excited for me to read her card to her.

The cousins actually played together, especially once Cora opened her new play kitchen.  This was quite the accomplishment, since Miss Cora is pretty shy and generally wary of small people that make fast movements and loud noises. You know, like toddlers.  

Cora and Auntie Mira signing "rhino."  What good signers!

Cora and her favorite Auntie Eri.

There are way too many photos and moments to share, but suffice it to say that it was a wonderful time.  Makes me wish Cora's birthdays rolled around more often.  Okay, not really.  Guess it's never too hard to come up with a reason for a good party, though.

When Low Tone Meets Low Motivation

 
I hear a lot from parents of kids with Down syndrome, telling the world how very hard their child works to reach milestones and accomplish things that come easily to the typical population.  How their child works tirelessly, pressing forward, eager to achieve, never giving up. 

And then I wonder:  why doesn't my child seem to have this pressing drive that so many other parents see?

In my reading on raising a child with Ds, I read that often children with Ds will find shortcuts and take "the easy way".  This isn't just due to laziness.  It's often because low muscle tone and hyper-mobile joints with loose connective tissue make it difficult to use muscles easily.  Muscles with low tone are not always ready to do work like typical muscles are, so extra signals need to be sent to make any movements.

So a movement that comes easily to a typical child may be very difficult for a child like Cora.  Case in point:  getting onto her hands and knees to crawl, bearing weight by standing, climbing up stairs, moving to a seated position.  A child with low tone actually needs to be stronger to do the same movements someone else will do, because greater strength is needed to stabilize loose joints and more work is required for even simple movements.

Reading more about low tone this weekend clarified to me why Cora does many of the things in the way that she does.  It helped me understand a little better what low tone means to her and why it is so hard for her to do certain things.

And it makes sense that if someone, even you or I, could adapt our movements to make certain things easier, we certainly would, wouldn't we?  

Well so does Cora.  And that's why she butt-scoots instead of crawls, and is just now learning to do things that very young babies often master well over a year before she was even willing to try.  The fact that she hasn't had much practice doing these things makes it that much harder for her to do them.  Her muscles haven't figured it out.  Her muscles haven't strengthened in the ways needed for her to do these movements.

But the difficulty alone doesn't exactly explain her lack of motivation.  I see pictures and stories of children Cora's age with Ds who are walking, taking steps and moving all over the place, low-tone and all.  Their parents constantly applaud their fierce determination.  

Cora just isn't doing that.  This is largely because it's just not her priority and it's not in her personality.  Children are often said to be either "motor driven" or "observers."  It is clear that Cora is an observer.  That she would rather read, and sing, play and communicate than try to walk or crawl. 

And, like her mother, she seems to not want to do things when they are too difficult.  I admit it.  When things don't come easily to me I am reluctant to expend the energy.  And it seems that Cora is following suit.  If there's an easier way to do something she'll likely find it.  Or she simply won't do it all until she's darn good and ready.

Happily, she has been making progress in gross motor recently.  On her birthday, she began to pull to stand regularly.  In the past she could do it, but seldom did.  Especially if anyone was looking.  But she seems to have figured out how to use her legs to get up, and is now pulling up all over the place.  Last week, cruising on the couch finally "clicked."  Although she could do it months ago, she just didn't.  But now she's learned that she can do it, and she's finally found the internal motivation. 

We still need to work on independent standing, bending her knees more (especially when sitting down), using a push toy and increasing her overall stability to move her toward walking.  It may take a while yet.  And with Cora it is so hard to say.

I've learned that it's really all about waiting until she's ready.  Trying to wait patiently and not get too frustrated seeing 6 month old babies doing things she's just now doing at 2.   Pushing her to do movements that she doesn't want to do doesn't work.  When she wants to, she'll figure it out.  And she's doing it; albeit very slowly.

For the record:  this is pretty much just my thoughts on Cora's gross motor skills.  I am fully aware of her strengths in other areas: signing, social skills and interaction, and extreme cuteness, to name just a few. 

The Big Girl

We spent Cora's second birthday just the three of us in a very Cora-centric day.  It was a blast.

The day started with a surprise video from her cousin Kai, who happily sang her parts of Happy Birthday and told "Can't wait to see you, Towa!"

We celebrated by doing all the things we thought Cora would love to do.  Instead of a cake, we started off the day with a birthday cinnamon bun.  But Cora wasn't that into it, so she got her very favorite food instead:  a bagel with cream cheese.

"Mama, what is this? Can I please have a bagel?"

Then we took her to OMSI (the Oregon Museum of Science and Industry) where there is an incredible play area for young kids. She had a blast in the pre-walker area and took over the ball pit.  Then she ran into her favorite musician, Matt, AKA Talullah's Daddy.  Look how excited she was to see him!

"Hey!  I know you!  But where's your guitar?"

She explored the sand area, the big wooden blocks, the market and kitchen complete with tons of toy food, the water play area and more.

But it was no surprise to us that she gravitated right to the book corner, where she happily sat in Daddy's lap and devoured all the science books.  Have I mentioned that science is in her genes?

Once at home, she opened some gifts.  Books, mostly.  She was pretty excited to get some new ones by her favorite author, Eric Carle.



And she got a new simple shape puzzle, as she continues to learn about shapes.

We finished off the day with her favorite pizza and some episodes of Signing Time.

A lovely day with our happy little 2 year old girl. 

And the birthday fun will continue.  My sister is flying into town soon, so we'll be celebrating both Cora and her cousin Kai's birthdays with a a bash pretty soon.

Stay tuned!