Adventures with Ellie: 9th Day of Christmas: Pediatrician, Early Hurdles, & Developmental Peds

Before we had Ellie, we searched around to find a pediatrician or group of pediatricians who were BCMH-approved providers. The pediatrician we had for our boys (Dr. Smith) was not part of this network at the time, so Ellie’s appointments would be in a different location than the boys’. No biggie. We chose a place that seemed great and came highly recommended from people we knew. Now, I’m sure this practice would have been just fine for our boys… but I struggled with them accommodating Ellie. First, we had the appointment about her hearing test where I explained everything on the phone and they made an appointment for a week later, only to have the doctor walk in and say, “Oh, she has Down syndrome… I can’t do anything for her ears here… you’ll need to go to Children’s”. It wasn’t the first time we’d been in the office – we were not new patients – and for us to make another appointment in our already packed schedule or to rearrange work to make it to this appointment only to be told they couldn’t do anything was frustrating, to say the least. We dealt with the frustration and moved on. Each time we came in, though, there were always extra people who came in with the doctor to “get experience”. Now, this happens all the time in the hospital, yes, but I felt like every time we had an appointment in this office, there was a new student that was coming in to check out Ellie. I don’t normally mind, but when I’m making an appointment to be seen, I’m not as interested in the teaching moment as I am in getting our concerns addressed. The straw that broke the camel’s back here, though, was when I was certain Ellie had impetigo on her face and neck… creeping closer to her trach stoma each day… and we were in the thick of RSV season with a kid that was already struggling through. I’d asked if I could come in and go directly to a room (as to not sit in the waiting area and get covered in sneezes). I’d asked if we could come in early or a bit late to clinic hours. I’d asked if I could send photos of the spots for the nurse or doctor to evaluate. I even asked if I could just check in from the parking lot and then come in right when it was our turn. All of my suggestions were turned down flat. I either had to sit in their waiting room (which was a hot bed of disgustingness during cold/flu season), or I couldn’t get the simple ointment I needed to control the impetigo and keep it from spreading to her stoma. I didn’t feel like I was asking too much and I feel like I offered a ton of alternatives that would work for us. Still turned down. On this particular day, I had already vented my frustrations to all three of our nurses and they all agreed that it was impetigo and as I dropped the boys off at preschool, the school nurse also looked at my photos and agreed. That afternoon, I took the boys to their pediatrician and asked if they were able to make a diagnosis based on a photo at all.

Their pediatrician took one look at the photos I had, and wrote me a script for the ointment I needed. Definitely impetigo. Why was that so hard? One of the nurses let me know that it’d be no problem giving us a private waiting space in the back when we checked in for appointments. This would mean that we’d have a clean place to sit and not worry about Ellie grabbing a toy that another kid just coughed all over. Sounds like I’m a germophobe, I know… but if you know me, I’m the farthest from one. I just knew Ellie couldn’t afford to risk getting RSV or other simple colds that her brothers could handle no problem and that while the waiting room was clean and tidy, sitting next to a sick kid was not an option for us. This doctor had no problem accommodating our needs with Ellie and we made a seamless switch… and we couldn’t be happier.

I’d actually met Dr. Smith when I was a photographer at the hospital. At that time, I thought she was kind of bossy – but maybe that was just because we shared a space in the nursery to work. She’s direct and doesn’t add fluff. When I was working along side her, I wasn’t so sure how I felt about this. As a mom, I needed this from our pediatrician. Dr. Smith doesn’t get too excited about things that aren’t a big deal – but she’s thorough and evaluates concerning situations with great detail. She’s also incredibly personable. Since she sees all of our kiddos, she’s helped us through wonky situations with each of them – full of compassion and understanding. We couldn’t ask for a pediatrician better than her. She’s feisty and fits our family and our ever-changing needs very well.

Rewind again to when Ellie was itty bitty and home as a newborn. I’ve posted before about her “normal” first two weeks, then about her going into heart failure at 15 days old. Once Ellie was put on diuretics by cardiology, she lost weight in a hurry. When she was a month old, she had been on diuretics for about a week and had dipped below her birth weight. Not cool. She was very skinny at that point. That’s when we were admitted to Dayton and worked through different techniques to beef up her calorie intake. In the end, we came home with our first feeding tube – an NG tube. With this came some more conversations with Help Me Grow and our BCMH nurse, Jenny, from the Health Department. The week after, we started getting visits twice a week from a nurse at the Health Department, Deb. Maybe part of me seeks out adult interaction because I work from home and my interaction is remote, or maybe it’s just socially ingrained in my personality, but when people come into our home… we connect. I’d known Jenny since I was a little girl. We went to church together and she had kids right around my age. When I saw her come through our front door, it was a welcome level of comfort. When we were in Cincinnati Children’s for four months, Jenny sent us an ecard every single week. I’m not kidding… she didn’t miss a week the entire time we were there. She constantly encouraged us and prayed for us. We’ll never forget her generosity and outreach. When Deb started coming out to weigh Ellie, she was a stranger… but only for that first visit. By the second visit a few days later, we had plenty to talk about and the boys squealed with delight that Deb was here again. Deb checked in with us while we were in Cincinnati. Deb and Jenny both followed our story on this blog, too. Earlier this year, when I found out that Deb had been hired at Shelby Hills as the new school nurse, I was elated. I had so much anxiety swirling around sending Ellie to school without her full-time nursing staff, but I knew this was a step we needed to take. When I heard that Deb would be just down the hall each day, it put my mind at ease. Deb knew all about Ellie’s history and we were close. I knew that Deb wouldn’t hesitate to call or text me when something was odd with Ellie – and that’s exactly what’s happened this year. It’s a lot easier letting your baby get on that big yellow bus when you know so many people on the other end of her trip and you know how much they already care for her before she steps foot off the bus on her first day. We are so incredibly thankful that we have these women in our lives!

Finally, we started going to the Down Syndrome Clinic (or Developmental Pediatrics) at Dayton Children’s when Ellie was almost two years old. I know, I know… we were supposed to start there when Ellie was 4-6 months old. Well, that didn’t happen. With all of our other specialists on board, this one just kind of got pushed back until we were in a stable place and were able to get into the clinic. On our first visit, Dr. Kasten told me that looking at her chart, she would have never expected Ellie to be doing as well as she is. That’s not the first time we’d heard that! She couldn’t believe how much Ellie was doing and how quickly she seemed to pick things up. She said, “She’s going to be walking in three months”. I didn’t think that was possible, but she was spot on.

There’s always a level of expected delays, but Dr. Kasten gave us a list of things we could be doing with Ellie that would help minimize the gaps we’d see between her and her peers. One of the things we were already doing a little, but she highly encouraged was sign language. We’d already been teaching Ellie some sign language and at two years old, I believe she knew somewhere around 20 words. Dr. Kasten was impressed, but said, “She seems very social. Let’s focus heavily on sign language because even when she starts to talk, she might have some trouble articulating what she wants in a way that you can understand. If you give her a huge signing vocabulary, she’ll be able to communicate so much more and possibly minimize some of the frustration with not being understood.” Easy enough! We signed up for a monthly all-access pass with Signing Time TV and Ellie’s vocabulary took off. By her third birthday, she knew about 120 signs… and that is expanding all the time now. Ellie is talking now, but signing far more words than she can say. There are days when she comes home with new words that I need to learn so that I can understand her, too… this is wonderful!

If you are looking to teach a little one sign language, I HIGHLY recommend Signing Time. You can buy the DVDs, but we opted for a monthly access plan that gave us digital access to the whole library. Ellie loves it. It’s how I get her to focus on something other than the 37 leads being attached to her during a sleep study… or how Melody gets her to stay relatively still so she can do her hair. Score! Dr. Kasten is also encouraging when we’re trying new things (like Learning Program) or when she had ideas that are different from mine (like potty training techniques). Because she sees hundreds of area kids with Down syndrome and her sole focus is on development, we value her opinion and suggestions. As if visiting her in clinic wasn’t already fun for us, our last two appointments have also had Lisa join in. Lisa is a genetic counselor, but more importantly (in my opinion), she’s a local mom who has a daughter with Down syndrome, too. She’s the genetic counselor that I met when I was pregnant with Ellie who gave me the straight talk about kids with Down syndrome being “happy all the time”. Ha! Lisa said, “You’ll hear everyone tell you that kids with Down syndrome are always happy. That’s not true. They have the full range of emotions that you and I have. I will say, however, that all the kids with Down syndrome I know do have one thing in common: they’re all very stubborn.” This was met with laughter… and over three years later, she could not have been more accurate. I love reading about her daughter (who is in middle school) and I can’t help but wonder how our stories will be relatable or totally different. Because, after all, each of our children has their own little personality. Just as all three of my kids are so different from one another, every kid with Down syndrome is different from the next. This is one thing that took a while to internalize for me – but this amazing staff of medical professionals helps me understand more and more each day.

Thank you, thank you to all the ladies on this list (this might be my first post where all of our medical team members were women). Thank you for being my sanity and my support system – thank you for being so real with me.

And for all of you reading along, thank you, too! We’re now nine posts through these twelve days of Christmas… and since I procrastinated a bit, I’m going to have to post one each day until Christmas Eve. Let’s do this! I hope that you are enjoying all the wonderful things this time of year and not making yourself too crazy with the hustle and bustle of it all.