Adventures with Ellie: 6th Day Of Christmas - Eyes & Ears & Mouth & Nose

Head, Shoulders, Knees & Toes.

How many of you are now singing along? Ha. This post will cover most of Ellie’s other specialists: ENT, GI, Optometry, and Audiology. That’s the best grouping I could do here, folks.

Dr. Elluru – ENT – Dayton Children’s

We first met Dr. Elluru in the PICU the summer after Ellie came home from Boston. Ellie was sick at the time, and we were in PICU discussing the status of Ellie’s trach. I told him the background story for why we thought Ellie got a trach (mostly because of cardiac-related pressures that would likely resolve when breathing was made effortless). We then told him that when we’d followed up with Pulm once home from Cincinnati, we’d asked, “How long do you think she’ll need her trach” and the answer was, “For most kids with Down syndrome who are trached for the reasons she’s trached, we start to wean off the ventilator right around three years old with the goal of decannulation around age five”. When we were in Boston, there was some hope that getting decannulated would be an easy road – but I gave him the (new to me) diagnosis of subglottic stenosis. Dr. Elluru said, “First… I’m never going to choose a course of treatment based on a diagnosis. I’m going to see what she can do and we’ll go from there – all kids are different.” That was exactly what I needed to hear to know that we’d for sure be establishing our ENT care with him. I didn’t want Ellie treated a certain way because “kids with Down syndrome tend to do X, Y, and Z”. Of course, we need to take some of those things into consideration… but she is her own person and so far, nothing she’d done had been textbook… so let’s not treat her like she’s going to fit into a bucket here. I immediately liked him and his bedside manner is fabulous.

He comes into a room and says, “Hey, momma” and talks to me about life and family and is a friendly man to talk to. When things didn’t go perfectly in the OR the first time he operated on Ellie, I could see that he was torn up inside about it. He was in our PICU room afterwards paying very close attention to Ellie. I put my hand on his shoulder and said, “It’s okay… these things happen”. He was humbled by that response and still brings it up to this day. To us… it wasn’t a big deal… but the weight on that man when he came into our room was palpable. Me freaking out wasn’t going to help matters much. Ellie would go on to see Dr. Elluru in the OR as many times as she’s seen all of her other surgeons combined. Of her 14 surgeries, he’s performed seven. Her tracheal reconstruction (Stage 1) was the longest surgery she’s endured – right at seven hours of operating time on that one.

Dr. Elluru giving Ellie a pep talk before her first surgery with him.

And Ellie w/ Dr. Elluru last month in clinic.

Dr. Elluru also manages our trips to the sleep lab (which we’ll be going to next week) and all of her scoping procedures. In our last clinic appointment in November, he said that as long as her next sleep study goes alright (not even amazing), she should be set to get her trach out. She may still have some suprastomal collapse (a collapsing of her trachea just above the stoma site), and maybe that’ll need another rib graft and reconstruction, but he thinks she can do that without her trach. This is all very exciting! We just may need those bandaids soon, y’all. Trying to not get too excited, though. After our miserable sleep study in April where I was completely crushed with failure, I’m trying my best to roll with the punches. I can’t help but be antsy, though.

Here's a cool article about Elluru from when he first came to Dayton Children's. I remember the staff being super excited to have him. Click here for the article.

GI – Dr. Williams – Dayton Children’s

So this is the one area where we really don’t have issues, but as long as Ellie has a G Tube, we’ll have GI on board to manage it. So far, Ellie hasn’t had any real issues with her gut… which is amazing, really. We know so many other families who have this as their main concern, so with everything else that Ellie has going on, it’s a relief that she can eat and poop and carry on as normal. Yes, she has a feeding tube, and yes, we still use it some… she’ll have a G Tube as long as she has a trach. I will tell you – feeding tubes are amazing and super convenient… until they come out… and Ellie is a master at pulling hers out. We’re able to give meds through the G Tube and we don’t have to worry about her spitting them out – this is especially helpful when we’re giving meds for storming that have a tiny dose and are administered when she’s crazy upset. We’re also able to give her formula and fluids via G Tube. If you saw my post earlier about her having RSV, let me tell you that she would have been in terrible shape without a G Tube. Ellie didn’t eat – not one bite – for seven whole days. She was barely awake any of the eight days she was sick… and any energy she did have needed to go to breathing. Her G Tube allowed us access to administer meds and give fluids and formula for those seven days so that she didn’t end up in a worse predicament than she already was.

GI also has a dietitian that meets with us each appointment… and some that come see us while we’re inpatient. Right now, they’re a little concerned that Ellie is so small. She teeters right around the 2^nd percentile for weight and the 5^th percentile for height… so for a full term kiddo, they don’t get a whole lot smaller than her. When she dipped down on her growth curve, it was met with some concern over calorie intake and such. So our oldest and youngest kids are both ones that we try to pump calories into. Hmmm… that has to be a gene from Brandon… it’s certainly not an issue for me. Ha! We’re not terribly concerned with this, though – she does eat and we know that handy dandy tubie will come out… and then she’ll just have to eat more! And it's probably a good thing that we don't have GI issues because we're now on our third doc. We really like Dr. Williams, though... so this is fine.

I mean... if you're going to have a G Tube - might as well make it adorable.

Optomology – Dr. Liston – Dayton Children’s/ Dayton Eye Associates

Ellie started seeing her eye doctor, Dr. Liston – in January 2017. This is another specialist that she sees, but our visits are quite uneventful. We originally sought him out after a referral from our pediatrician. Ellie loves to look at books – and puts her face about three inches from the page when she does so. She also does this with my phone. We knew she COULD see things further away because she’d sign “Daddy” as Brandon walked through the front door… but we didn’t know how much she was actually seeing. Dr. Liston dilated her pupils and ran some test in his office before assuring us that Ellie’s eye sight is exactly as it should be. Yahoo! Although, there are some pretty cute specs… I’ll keep those in mind if we ever need them. The most excitement we had in the eye appointment was provided by Kaleb who was grabbing a toy from across the lobby, and asked loudly, “Hey mom, why does that lady have a patch over her eye? Is she a pirate?” Oh, Kaleb… you kill me.

For those of you wondering, in our house, we don’t assume that something bad happened to people who have something different (like a patch or a wheelchair). We say, “Everyone has different eyes, just like everyone has different skin and hair. My skin isn’t the same as Kaleb’s skin and my eyes aren’t the same as Lance’s. My tummy looks different than Ellie’s too… and that’s okay. Normal is boring.” Okay… so that last sentence might not sound very nice… but it’s our way of appreciating differences… life would be boring if we all looked, acted, and thought alike, right?

Audiology

Ellie’s had several hearing tests, thankfully, they’ve all been normal. When she was about a month old, we had her at a birthday party. This party was super loud with lots of kiddos running around and popping balloons periodically. I noticed that every time a balloon popped, people jumped – kids cried – and the cycle continued. After a bit, I noticed that Ellie had slept through all of this. Later, I noticed that even when Ellie was awake, the loud pop of a balloon elicited no reaction at all. Could she hear? How in the world would we know if she was hearing at all? We called her pediatrician at the time and voiced our concerns. They scheduled us in their office for a hearing test. I spent a few days seeing if Ellie reacted to any sounds… loud claps… voices… her brothers and their innate loudness. Nothing. Part of me went all fearful again. I was already concerned with her ability to “fit in” once she was school age. Now I was concerned that not only would these potential friends have to accept her outward differences, they’d also have to know a new language in order to communicate with her. Getting the cart ahead of the horse here, I know. But if I’m being honest, all of these fears rushed through me.

We met with her pediatrician who walked into the room to talk with us (we’d been here a few times already) and then said, “oh wait… she has Down syndrome… I can’t do her hearing test here. We have to refer you to Children’s for that.” Not impressed. At a time when we already had 3-5 appointments each week… I did not need a waste of time like this. This was just one of my many frustrations with her first pediatrician. Off we went to Children’s a few days later for a hearing test while she slept. The first round was a no-go… Ellie refused to sleep. We had two other appointments in Children’s that day, so we went off to another clinic, hoping to get back into Audiology by day’s end. We managed… and they were happy to report that while Ellie may not have the expected response to noise, her ability to hear looked just fine. Whew! On that day, I was thankful that Ellie wouldn’t have to go to school with sign language as her primary means of communication. Bahaha – how the tide changes.

She’d go on to have other sedated hearing exams, and each time… pass with flying colors. Yahoo! And once trached, we were working to teach Ellie American Sign Language (ASL) on a daily basis. By age two, she had a vocabulary of 20-30 signs. By three, she had about 120 signs. Now… just a few months later… it seems that her sign vocabulary is expanding rapidly. And you know what? Those little classmates of hers… yep, they’re learning sign language, too. They’re not having any issues communicating with her. Score!

So on post #6, we’ve covered four more specialty areas for Ellie… we’re almost through our list of medical providers. And we’re now half way through our Days of Christmas posts to this blog. Thank you for sticking with me through these. I hope you’re maybe learning a thing or two… maybe you’ve found something useful to share with someone else… or maybe you’ve just enjoyed the pictures as we go along. No matter what, I appreciate you following along – and I hope you’re staying warm – it’s blustery in Ohio today.