Toddler Phase & Holland

Ellie is now 19 months old (as of Sunday).  And every ounce of her being is pure toddler.  As much as I hate to let go of the baby phase, I so love the spunk and personality that comes with the toddler phase.  Don’t for a second think that Ellie is free from the regular toddler things, either.  I picked her up off the floor the other day after she was tearing all of the medical supplies out of her trach care drawer (she was literally throwing sterile cotton swabs and gauze pads in the air and letting them rain down over her).  I went to move her to a different side of the room so I could clean up the mess.  As I had her in the air, she flailed her legs front to back, creating enough momentum to thrust her whole body back and forth while she pouted in my arms – full on tantrum mode.  TODDLER!  She sat on the rug and I said, “No, Ellie, you can’t play with that (while signing NO to her).” 

She signed, “mine”. 

“You’re right, Elz… those supplies are all yours… but you can’t play with them.” 

Pouty face… signing, “mine”.  Toddler. 

She likes when we sing “The Itsy Bitsy Spider” and she does the hand motions along with it, but she really doesn’t like the motion that goes along with “out came the sun”.  I usually pause the song and say, “c’mon Ellie… show me your sun”.  She stopped Tuesday and signed “no, no, no” to me.  Yikes… that’s sass.  I’m in trouble.  She’s also learned to sign “what?” with her hands up.  She uses it in the most ridiculous ways.  She’s being rotten and she knows it.  I say her name in the “What are you up to?” tone… she signs back “what?”  Oh, how I wish I had a video of a day in the life of Ellie to share with y’all.  She might be the funniest little person I’ve ever met.  She fully understands everything that is going on around her… don’t you think for a second that she doesn’t.  She chooses who she interacts with and when – and she likes to see who will play games with her – but only on her terms for now.  It’s safe to say that she is quite the little social butterfly.  She’s still very overwhelmed in larger social settings, and rarely lets others hold her right now, but I’m sure this is just a phase.

She's currently obsessed with eggs.  

And how cute is the little beach outfit the Easter Bunny brought her?

We’d set a goal at her first birthday to have her crawling by 18 months.  We’re not there yet.  She is doing amazing things in therapy, she really is.  She’s able to sit on my knee and she’ll stand up all on her own to play with things on the couch.  She’ll shift her weight from leg to leg in a standing position.  She’ll kneel on all fours and move a bit… and she’ll army crawl her way all over our house.  But a belly-off-the-ground crawl, not yet.  I have to admit that I was pretty bummed out when we were getting close to the end of March and it was clear that this just wasn’t going to happen.  As I think about this today, I’m so very aware that today marks two years since we received Ellie’s first diagnosis.  On April 7, 2014, we were 18 weeks pregnant and we found out that we were having a little girl… and we found out that our little girl did, indeed, have Down syndrome.  We’d waited ten excruciatingly long days for test results to come back to say whether our 1 in 93 chance was positive or not.  In those ten days, we imagined so many things about our future child.  We prepared ourselves for a future as parents raising a child with Down syndrome.  In the midst of the fog, a friend sent us this analogy:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I still can’t read this without tearing up a bit.  But I have to say, I’d take another trip to Holland any day… Holland is amazing.  Holland is beautiful.  And tulips have always been my favorite. 

But not until I experienced Holland did I realize how amazing and effortless Italy was with my boys.  I’m not saying parenting is easy… geesh, that’s not at all the case.  The boys cause far more stress on the daily than Bug.  And there’s nothing in me that is jealous of how effortless (read: normal) Italy was or is for others… nothing at all.  Italy is great.  Holland is great, too.  I just wish I had an ounce of appreciation for how amazing Italy was when I was living it.  I’m still living it and I’m not fully able to appreciate how amazing Italy is sometimes. 

On Easter, my nephew (who is not quite nine months old) crawled over to me, kneeled at my knees, propped himself up on his one arm, and turned to look at what was going on behind him, supporting all of his weight on one arm.  It was like this monumental feat of strength and masculinity in this tiny (impossibly adorable) little body.  There was strength and purpose and rigidity in his pose.  Then he let himself down gracefully and went on to the next thing.  I sat in amazement.  Italy is amazing.  There is not a jealous bone in my body folks… don’t read that wrong… please don’t.  I love my squishy baby more than you can imagine.  And I love carrying that little girl around.  I’ll carry her around for as long as she needs me/wants me to.  That’s not what I’m getting at here.  It’s just that when you work with a kiddo for months (like… ten months) to do a task and it’s not happening yet… it amazes you at how naturally it usually happens.  Okay – long tangent – but to get to the point, Ellie is doing really well with therapy, but she is not yet crawling.  Who knows when she’ll do that?  We’re just taking in the slow pace of this Holland ride and trying desperately to give her the tools and therapy she needs to get to where she’s going.

Ethan showing Ellie how it's done!  Goodness, can he be any more adorable?

When we read (two years ago) that kids with Down syndrome may not walk until their second birthday or later, I couldn’t imagine carrying around a two year old all the time.  It’s funny how things that seemed like they would be so cumbersome before aren’t even a consideration these days.  Of course, we will do everything we can to get her to meet the milestones she needs to meet, but she’s really quite a peanut… and she fits just perfectly in my arms, ya know… I could carry this kid around for years to come and be perfectly content.  Funny how things change, huh? 

March was a big month for Ellie with appointments, too.  She stayed rather healthy… except for a yucky little bout with hand, foot, and mouth – ick.  We met with all of her specialists through February and March and we’ve been cleared by cardiology to move to annual appointments.  That’s a HUGE deal, people.  For the kiddo who needed to see cardio a few times a week… the one who was in the depths of heart failure at this time last year… ahhhh, I can’t tell you what it’s like to see a normal, 4-chambered heart on an echo and hear that there is no leakage in her valves.  Just so you know, I’m never going to stop posting about that.  I’m never going to stop singing the praises of her team in Boston and the Almighty that lead their hands last May… it’s just too much for words to ever justify for me. 

From a pulm standpoint, she’s been cleared to wean off of the ventilator through the night, but we’re waiting until after our April appointment to make those adjustments.  She’ll be moving to a cool mist machine that’ll deliver oxygen and cool mist through her trach while she sleeps.  This will make sure she doesn’t drop her oxygen levels too low while she sleeps (we have no idea how long she’ll still deal with sleep apnea).  But it’s a big step to get rid of the need for ventilation during sleep.  We’ll still have it on hand in case she gets sick, but it won’t be part of our daily routine.  Yippee!  Her ENT agreed that we’d be ready for her next big surgery in July.  We’re both excited and nervous about this.  This will be the step we need to take to get her ready to move towards getting rid of her trach.  She’ll need some sedated procedures a few weeks before surgery, then surgery in July… then work on using her upper airway after the newly constructed airway is fully healed.

Doodling with Rae while she waits on the doctor to come in

And finally, from a GI standpoint, nothing major here.  Ellie is eating well by mouth (this sounds silly to most of you, I know… but in the tubie world, eating by mouth is kind of a big deal).  She actually eats with us at all of our meals.  She seems to be pretty stuck on purees – she’s comfortable with all stages of baby foods, really.  We can’t complain there.  When we give her chunks of foods (like little cooked apples or carrots), she spits them out at us.  Not a fan.  She will nom nom on little bits of peanut butter sandwich… we’ll chalk that up as a win!  We’re trying to figure out a way to wean her off of the nightly tube feeds without screwing up her calorie intake.  This kid doesn’t gain weight for anything… okay, she does, it’s just slow.

So all in all, Ellie is doing great.  She’s making strides in therapy.  She’s making strides medically.  She’s learning sign language… and she’s certainly embracing everything about this toddler phase.  She is sweet and spunky and adorable and rotten to her core.  We love this Bugglet and we love that she’s been our tour guide through Holland for the 19 months we’ve been touring there.  Holland and Italy are indeed different… both beautiful and wonderful, though.  We just have to be careful that we’re able to celebrate the gondola rides AND the tulips in our household – a constant balancing act.   

Crazy socks for World Down Syndrome Day 3.21 

(celebrating all the kiddos w/ 3 copies of the 21st chromosome)

 Boys at an Easter egg hunt at Aunt Kay's house

This last picture is so near & dear to my heart.  On March 25th, we went to Cincinnati to meet up with some special friends of ours.  We'd met them back at the RMH while Ellie was inpatient in Cincy and have since leaned on them for so much.  When we met this day, they were preparing for the memorial service/celebration of life for their sweet Khloe the very next day and we wouldn't be able to make it because of Easter plans and such.  We were able to set up a pizza date, though.  We were able to get our kiddos together and let the boys hang out while us parents shared hugs and stories and a few tears.  We were able to tell each other our favorite stories about Khloe and Ellie and about triumphant and frustrating times.  We talked about things that you can only share with people who have walked the steps of complicated kid world and asked the questions you can only ask inside of this safe bubble of trust and understanding.  All the while, our sweet boys played together and hung out in all of their innocence.  Sandy and Diana stared at Ellie... loving the fact that she was eating... with her MOUTH!  We laughed and loved on each other like friends do... and it was just what we all needed.  I'm not sure when we'll get to see this sweet family again, but I'm so thankful that we made this trip to see them in the midst of their very busy, very difficult weekend.  We were all very aware of the empty space among us that little ladybug should be filling.  We love and miss her dearly.