Adventures with Ellie: Preparing for a superhero’s day…

As of yesterday, our sweet bug was eleven months old. Eleven! Part of me is super excited that we’re almost at that first birthday celebration… the other part of me is a little freaked out because I have a lot to do before then. Ehhh… it’ll all go as it goes and Ellie will be her sweet, happy self through it all.

Ellie is thiiiissss close to sitting on her own right now. She sits sometimes when she thinks you’re supporting behind her, but wobbles when she doesn’t feel you holding her. She’s strong… so much stronger than she was just a few weeks ago. That little core of hers is incredibly strong. Most babies hold their torsos up in a leaned over sitting position… but not Ellie. Her arms are weak (and adorably puffy). She just lets those little arms do whatever they want to do (which means she leaves them floppy at her sides) while her core works in every direction to stabilize her body. This is great, yes… but she now relies so much on her core that she’s not learning to push up with her arms. She’s improvising… so we have to keep challenging her. Our nurses and therapists are amazing. While we do lots of therapy exercises with Ellie after work as we’re playing… she wouldn’t be making the strides she’s making without getting several additional sessions each morning and afternoon with the nurses. These nurses are making this easy on us most days. And now that we’re meeting with therapists each week, we’re constantly loading up our arsenal with new challenges and goals and toys towards progression.

Ellie is starting to wave and has clapped… twice. But that takes a lot of coordination, so we don’t see it often. We’re trying to get her to reach above her shoulders in a sitting position… something that is all but exhausting for Ellie. We’re rigging up all kinds of little therapy stations in the house to always up the ante on her. Poor Ellie… playing is so much work for her… but we know that if we ever stop challenging her, we’re failing as parents. She might look like a baby and it’s comfortable to cradle hold her – but we’re trying our best to treat her like a toddler… make her sit, encourage her to kneel (which she hates with a passion), make her reach and pull and push and do all these other big-kid things to encourage development. The struggle is real, y’all! Ha.

And a big (HUGE) development in the world of our sweet Bug… a voice! I know… this is such a big deal, right? We were given a Passy Muir valve in Cincinnati when Ellie was only a few months old, but I wasn’t in the room when they went to use it. They told me that she was not strong enough for it at all… and I kind of left it at that. We went back to it again after my last post and we were allowed to go ahead and try it. First, let me explain what this is: normally, she has an HME on her trach. And HME is a little barrel-shaped attachment that captures the moisture in her breath as she exhales and moistens the air that she inhales through the filters. This is also called an artificial nose, for that very reason. So with the nose (or HME), Ellie can breathe in and out on her own. With the Passy Muir valve, Ellie can easily breathe in through her trach, but it’s impossible to breathe out through it. This means that she must reroute the air that she needs to exhale up through her voice box and out of her mouth and nose. It’s actually quite crazy to watch for the first time. For so long, she’d not moved any air out of her nose or mouth, so she had to learn how to bring her air UP. Weird, I know.

We put this valve on her and let her try for just a few minutes, expecting her to freak out and hate it. We were monitoring closely as we chartered this territory with her. She coughed a bit, and let out this hoarse, raspy moan. She kept making this throaty sound for a while; then, this pretty little voice emerged. Once we got her to open her mouth wide, she discovered that she really could breathe out of her mouth with it. I cried and wiped away happy tears as I squealed and clapped for her. It was obvious that Ellie knew that she was indeed making this sound, and seemed quite impressed with herself. For several minutes we sang, “La, la, la, la” at her and allowed her to respond. Oh, what a wonderful day! We drove around that evening to show of this new skill. She cried with the valve on… and that sent me crying again. I hadn’t heard my sweet girl cry since December (well, except for in an emergency situation where I was NOT focused on how sweet it was). Ellie is now to the point where she will see me pull out the valve (we only use it when she’s nice and awake) and she’ll start getting excited. What little girl doesn’t want to talk? She has quite the story to tell, you know! So that’s one more hurdle we’ve jumped in the past few weeks since I’ve updated. What a wonderful thing it is to hear her voice… finally! We chat daily now.

Getting piggy kisses from Grandpa (you can see her speaking valve here)

Now that we don’t have a barrage of medical equipment attached to her on our outings, strangers are starting to feel a little more open to make their weird comments again. Ehhh… whatever! I had a man at a restaurant ask, “Is she Down syndrome?” This didn’t bother me, really… because he was well-meaning and sweet with the story he told, but I did say, “she has Down syndrome, yes.” This is just always going to be a pet peeve of mine. My grandpa had cancer… no one ever asked if he was cancer. [Don’t for a moment think I’m relating the struggles of Down syndrome to those of cancer… that’s in no way what I’m doing… I’m just telling you all how ridiculous it sounds to define someone by a condition they have.] And then there was the crotchety lady at the store who rudely said, “what’s wrong with her?” I said, “Excuse me?” She said, “What’s wrong with that baby?” I mean… in all fairness, this was just her way of inserting a rude segue into telling me about how fruitless and disappointing her life choices were. One of those people who follows you around unloading their baggage, you know? I guess she was just waiting to inflict that on the next person in search of thumbtacks that day… lucky me! I just wish I didn’t have all three kids with me. The boys don’t know that anything is wrong with Ellie… just that Ellie is Ellie… and that’s that. I’m sure they were just as taken aback when a stranger asked what was wrong with their sister. I’ll encourage them to kick future offenders in the shins! Take that.

Enough about grumpy people… we’re getting dangerously close to this birthday celebration and I couldn’t be more excited. I totally get into this 1^st birthday thing… Lance had a monster theme… Kaleb a farm theme. Ellie… we’re giving her a superhero theme for her big day. After all, she is my biggest hero and she is definitely packing superpowers in under those little chunky rolls of hers. We’ll have a party… see if she can eat cake and celebrate the heck out of that day! The original invites I picked out said, “A year of laughter, a year of fun… our little Ellie is turning ONE” But that didn’t seem to describe our first year. Half of her first year was spent in hospitals. Half of her nights sleeping in the cage with monitors and wires and tubes. So laughter and fun didn’t capture the whole picture well at all… but as we thought about it, nothing really captured the year she’s had. She’s walked a tremendous valley, yes… but she’s also been given so much more than we could have imagined possible. She’s been given love and support from family, friends, and strangers. She’s been given hope and promise and literally, a new life. She’s been given a brand new heart, for Pete’s sake… what more could we want for this kid? So as we thought more about Ellie’s birthday, we realized how big of a celebration this was. It’s truly a miracle that she’s able to celebrate a birthday at all. She’s been given the gift of life this year… a complicated one, maybe… but life. She’s been richly showered with love and support; she’s been treated with medical advances that were crafted by God himself. She has a team of medical professionals and therapists that cheer her on at every turn and the army that is Team Ellie Bug that always has her back. She really is the little girl who has it all this year. Instead of doing things for Ellie on her birthday, we’re going to do our best to give back… at least a little. If you feel lead to celebrate with us in this way, we’re going to collect unwrapped gifts and monetary donations to bring down to the Ronald McDonald House the weekend after her birthday (Sept. 5^th). We’re going to celebrate with her by serving a meal there and bringing gifts for other kids who might be spending their birthdays in treatment. If this is something you’re interested in helping with, please contact me (Jacquelyn.schroer@gmail.com). I would love to shower others with the love and support of Team Ellie Bug in September.

Well, friends… that’s all the updates I have for now. Our tough little bug is growing and learning every day… right now she’s slumped over sleeping in her boppy after some pre-bed therapy. She’s officially the most blessed person I know with the sweetest little voice… and she’s about to have a big fat birthday celebration. We have so many people to thank for making this first year possible… and so many people to encourage with her life and story. We know that none of this would be possible without the tremendous support of Team Ellie Bug all around the world (for real). We love you... and now for some photos: