The Road to Diagnosis: Eyesight and Advocacy

The first time I advocated for Landry, it really didn’t feel like much. It wasn’t a defiant, hands-on-my-hips, dig-my-heels-in sort of moment that I sometimes mentally associate with advocacy. Although, I will say, I’ve had some of those moments since and Pete would tell you that I’m especially good at the hands-on-my-hips part, whether I’m speaking up for Landry or not.

I was confident Landry couldn’t see; that’s how it started. I couldn’t explain how I knew, I just did. I’m starting to learn that that’s just how moms work. I was as certain that Landry couldn’t see as I was that the grass is green and the sky is blue. I mentioned in a previous post that Landry was not making any eye contact, visually tracking any objects, and was not following me out of a room or searching for me like a baby of her age should be. This was hard for obvious reasons – a lot of bonding happens through eye contact – but it was also clear that something was wrong. I knew it could be something beyond vision, but I also knew that vision, or lack thereof, was not going to help anything. Truth be told, I wasn’t sure Landry had any sight at all. You could have told me she was blind and I would not have been shocked. Devastated, of course, but not shocked.

Landry’s pediatrician at the time was truly amazing. She was right on the ball with her developmental concerns and I’m often very thankful that she didn’t waste any time. However, our initial list of referrals lacked one that I felt should be on the list and wasn’t: pediatric ophthalmology. I told our doctor that I was confident Landry couldn’t see and I wanted to see an ophthalmologist. I could tell that she didn’t agree with me. In fact, I think she came right out and said that she didn’t think it was a problem with Landry’s eyesight. Regardless, she did it anyway. There. I did it. I advocated for Landry and that’s literally all it took. All I had to do was ask and, lo and behold, I got just what I requested, however reluctantly it was. It wasn’t hard and was the gentle introduction to speaking up for Landry that I didn’t realize I needed.

If I could offer one big piece of advice, it would be this: if a doctor does not take you seriously as your child’s best (or maybe only) advocate or, at the very least, cannot provide a satisfactory explanation that eases your mind, they are probably not the doctor for your child. It doesn’t mean they’re a bad doctor. It doesn’t mean your opinions are too strong. It doesn’t mean their medical advice might not be great for another child. It means only one thing: you are not a good fit for each other and that is OK!

If you didn’t know, pediatric ophthalmologists are not easy to come by. There are only two in Illinois outside of Chicago so they are in pretty high demand and hard to get into, especially when being established as a new patient. While we were waiting on the referral process, however, I had a scare with Landry’s eyes. Changing her diaper one day, I happened to notice that her pupils were different sizes. I knew enough to know that this could be dangerous so I immediately called her doctor (I think still not knowing what, if anything, was going on with her neurologically exacerbated my worry). Our pediatrician saw her that afternoon and, thankfully, felt comfortable clearing us to wait to see the eye doctor. This could have warranted an MRI of the brain, but our doctor was not in favor of unnecessarily sedating a five-month-old and wanted to defer to the eye doctor; I agreed. The good news in that situation was that it did speed up our wait to be seen. Even faster than that, they worked us into a cancellation and we were seen the very next week – hallelujah!

Our first appointment was a long one. If I remember correctly we were there for almost four hours. We waited a while, were seen for medical history and intake questions, eyes dilated, waited again, and then finally examined. I was nervous that morning. I was nervous that, for some crazy reason, her vision was going to be fine and I was going to feel really silly for pushing it. I’ve been asked a lot how you can write an eyeglass prescription for someone who can’t tell you what they’re seeing. Because it’s way out of my league to explain the specifics, I’ll just say that it was really fascinating. With her eyes dilated and me holding her still, they were able to use different magnifications to determine her visual ability and her prescription. As it turned out, Landry did have eyesight (praise God!), but, as I expected, it was not good.

Landry had a farsighted prescription so strong that it put her in the category of “severe.” While she did have vision, she was not able to see anything around her that wasn’t blurry. I have tried before to make an actual determination of what this means in terms of distance, but unfortunately, there’s no straightforward conversion of visual acuity to diopters (measurement by which eyeglass prescriptions are written). Her prescription was actually so strong that she could not be started out in a full-strength pair of glasses. We would start her off with half of her prescription and then give her the rest six months later. Unfortunately, between Landry’s hospitalizations, COVID, and a few other circumstances out of my control, this actually still has not happened, but that’s a story I plan to dive into another day.

Once again, we had a doctor, her staff, and a plan that I felt completely comfortable with as we left the office that day, but despite that, I remember feeling a very broad range of emotions as we left as well. It feels strange to say that I felt happy, but in some ways I really did. Of course, the most obvious reason being that, with correction, Landry would be able to see well, but there was also a huge satisfaction within myself that I knew my baby so well and felt strongly enough to ask for what she needed. This was like the mother (no pun intended) of all “I told you so!” moments! On the other hand, though, I was saddened by the fact that Landry had lived five months in a world she couldn’t really see. She had never clearly seen my face or Pete’s or Chandler’s. She had never clearly seen her toys or made out the pattern of the wallpaper in her nursery. I truly can’t imagine that, but found comfort in the fact that she didn’t know any differently. Mostly, though, I felt hopeful. I was hopeful that glasses were going to really turn things around developmentally for Landry. It made perfect sense; of course you are not going to track objects that you can’t see, you are not going to play with toys that aren’t interesting to you, and you’re definitely not going to make eye contact with faces you can’t identify.

At the time, I didn’t realize what a long road we still had ahead of us with Landry. But after a couple very long, scary, uncertain months, this was a welcome dose of encouragement. The specialty medical world sometimes seems to just be a big game of “hurry up and wait,” but, finally, we had done something in a timely manner that had actually proven to be very necessary and successful, whether or not it fully explained her delay (spoiler alert: it didn’t). Plus, if nothing else, Landry looked really stinking cute in her new turquoise frames. I involved Chandler by letting her choose the color of them, within reason. We had fun doing this together and it was also the beginning of me realizing how important it is to involve her in Landry’s care.

one of my most favorite pictures

I tell you this story to, quite simply, say this: YOU know your baby better than anyone else ever could. Doctors are medical experts, but they are not experts on your child; only you can fill that job description. If something doesn’t seem right it very well might not be. If you’re questioning something, ask. If you’re not taken seriously, find someone who will. If you’re not satisfied with your experience somewhere, move on. The very worst thing that could happen is that you could be wrong (I get it, I don’t like being wrong either). But the very best thing that could happen is that you’re right, which you probably are, and you get to provide opportunities and care for your child in a way that no one else can do. Trust your gut, mamas. We are the best at that. Ask the questions. Have the intimidating conversations. No one can love or speak for your child like you can. We believe in our kids and it’s time to believe in ourselves and our instincts as well.

xo – Lindsay

** I’m honored and excited that you’re here as I continue to tell the story of our road to Landry’s diagnosis and beyond. I plan to be an open book in hopes that our story can be a blessing to someone else. I absolutely will welcome and happily answer any questions about our journey or Landry’s diagnosis. If you want me to elaborate on anything at all, please just ask!

The Road to Diagnosis Pt. 2

As I mentioned in my previous post, Landry’s four month check up was the day the ball started rolling with recognizing and figuring out her developmental concerns. I was thankful then and I am still thankful today that we had a doctor in our corner who trusted my gut instinct as Landry’s mom and main advocate. I have never had a doubt in my mind that it was our proactive approach to her development, or lack thereof in that moment, that got her the head start she needed.

The rest of the day after that doctor’s appointment felt like a blur. I don’t remember a lot of specifics, but I know that I was sad and I know that I was worried for the weeks and months to come and what we might find. It was common for me to pick up the phone following a well baby appointment with Chandler. I thought it was fun to report to everyone that she was happy and healthy, laugh about her height and weight stats, and to recall how our doctor had doted over her during the appointment. I didn’t feel like doing that after Landry’s visit. That evening I eventually filled in some close friends and family that were aware of my concerns that, yes, there was, in fact, something going on. However, in the moments immediately following our visit, I couldn’t bring myself to pick up my phone to text anything out of excitement.

That night I held Landry on my bed. I probably cried, I don’t really remember. I do remember, however, sitting on my bed with her, holding her tightly, and looking her over really well, possibly better than I did the day she was born. I looked at her face, her hair that was coming in, her hands. I tried to look in her eyes, but she didn’t, or maybe couldn’t, look back at mine. This night is one of my most vivid early memories of Landry’s life. I had the next morning to start making my phone calls. I had the next few weeks to start seeing doctors and therapists. I had the next month or two to get my answers about Landry (how naive was I? I honestly thought the process would move that fast.). But in that moment, with Landry on my bed, I let myself have that one night. I let myself feel the emotions of the day and I let myself feel the tension that had built up over my suspicions before I got moving the next morning.

I don’t know if I slept at all. My guess would be not much or at least not very well. I remember waking up the next morning and still feeling the heaviness I closed my eyes with. This all didn’t go away overnight, not that I expected it to. I had a list of phone calls that needed my attention. Although I still felt the dread I took to bed, it was topped by a sense of urgency. We had recognized the problem(s) with our doctor, she had given her guidance as to our (my) next steps, but no one could physically take those next steps for me. As I write this, I’m reminded of a funny graphic I’ve seen that says, “when you’re looking around the room for an adult and you realize you are the adult.” That’s sort of what this felt like. I’m the mom; this was all on me.

I started with Early Intervention, which, if you’re familiar with them, getting started can be a process. I left my first voicemail and thought I’d be waiting. But something that I can now recognize as only God working, nudged me to text a physical therapist friend I made a few years prior through Chandler’s EI experience. I apologized for bothering her (I imagine that medical professionals get sick of constantly being asked for advice) and I briefly explained our doctor’s visit from the previous day and what my next steps were to be. I mostly wanted to know from to her if there was a way to fast forward the Early Intervention process. I am impatient by nature, but I knew that time was of the essence here and my impatience was only exacerbated.

Fast forward a short while and my phone vibrated with a response from my friend. It was a short text. She was on vacation with limited service, but “just happened” to be in a spot to read and respond quickly (I see what you did there, God). We made plans to get together when she got home and she would look at Landry for me, as a friend. She’s a mom too, she understood my fear, and she understood my unwillingness to wait or play games with what little time I had. So to answer my question from above, there is a fast forward button on the EI process; it’s called having a friend in the business and a God that coordinates the pieces of His plan to create a perfect timeline.

I arrived at my friend’s house in the afternoon. It was informal. Her kids were home and she was in comfortable clothes. The only reason I wasn’t is because I had been out having lunch and shopping and trying to pretend I didn’t want to throw up from nerves just prior to our meeting. When I got there, I also realized she had arranged for our new Early Intervention service coordinator to be there as well so I could sign all of my consents and we’d be on our way with the program. Remember that fast forward button I just mentioned? This was it. Landry’s evaluation began and I was simultaneously answering questions from our service coordinator. This could have been overwhelming, but I think I was just so relieved to be starting something that I took it in stride. I summarized my pregnancy, Landry’s birth, and the first few months of her short life. I talked about what she was able to do and what she wasn’t. As we talked, I could see concern on my friend’s face just as I had seen it written on our doctor’s face a week prior. It wasn’t any less alarming this time, but on the other hand, it also wasn’t any less comforting that my suspicions were confirmed once again.

There was one major overarching theme to this meeting; it was that we needed to move and we needed to move quickly. No one could say what was wrong with Landry, but everyone agreed there was something going on. My friend was authorized on-the-spot to make that our official physical therapy evaluation, which I got the impression isn’t common practice, but doable in certain situations (there you are again, God). That authorization got our Early Intervention process started that very day and we also arranged to see two other specialized therapists, a developmental therapist and a feeding therapist. The feeding therapy recommendation stemmed from both ladies watching Landry take a bottle during our session. By this time I had gotten so used to her eating habits that they hardly seemed abnormal to me anymore, but apparently they were alarming. I could write an entire post on feeding and I plan to in the near future so I will spare you those details for now.

The day of this first physical therapy evaluation is another one that I remember like it was yesterday. I remember the smallest of details down to the shirt I was wearing and what the rug looked like that we sat on. I also remember that Landry, whom, at four months old, should be meeting a much longer list of developmental skills, was only able to complete seven. Only seven – I remember how devastating that felt. The ability to quantify my concerns and her lack of activity with a percentage on a scale was hard to process. At this point, the delay had just been a thought in my mind. This made it tangible. BUT – and I capitalize that because it’s that important – it also gave us a marker by which to gauge her improvement! I won’t lie and say that thought was in the forefront of my mind on that day because it wasn’t. In fact, my mind couldn’t have been further from such a positive thought. But I’ve seen enough in the year that’s followed to know that it is so important to have a starting point. I will touch in depth on this another time, but Landry now has a lot more than seven skills and we’d never know exactly how much she’s grown if it wouldn’t have been for the information provided in that original assessment, as upsetting as it may have been at the time.

I was discouraged and disappointed that day when I left my friend’s house. I barely made it to the car before the tears flowed. Landry was over four months old at this point and was the developmental equivalent of less than one month old. Unless you’ve been there and I know many have, I can’t find the words to tell you how that feels as a parent. Truly nothing in my life to that point compared to what I was continuing to find out about my baby. I don’t say this to put a damper on your day, however. I tell you all of this because of the hope it will provide when I tell you later how far Landry and our family have come. We have all made it a LONG way from those first few weeks of processing and trying to trudge forward through what felt like wet cement. Yes, it felt that difficult in the beginning. But I’m able to write this today because I’ve seen the other side of the story by now and I can tell you that it gets better. So much better.

No one can gauge progress without a starting point. No one can see how far they’ve come unless they make note of where they started. I need this reminder daily and I am thankful that Landry provides it for me. God knew what I needed when He gave her to our family. It is impossible to help someone grow and develop if we aren’t willing to meet the person where they’re at. That includes ourselves. That day I came to terms with and met Landry where she was at and we are both better people for it.

I am honored and excited that you’re here as I continue to tell the story of the road to Landry’s CHAMP1 diagnosis and beyond. I plan to be an open book in hopes that our story will be a blessing to someone else. I absolutely will welcome and answer any questions about our journey or Landry’s diagnosis. If you would like me to elaborate on anything at all, please just ask!

xo – Lindsay

The Road to Diagnosis Pt. 1

Fifteen. My parents were married on the 15th of the month, I was born on the 15th of the month, and it’s no secret that taxes are due on the 15th of every April. I got my first cell phone and had my first boyfriend when I was fifteen years old. I’ve lost and gained the same fifteen pounds more than once over the years and I’ve easily been to Destin, Florida fifteen times, probably more. I’ve been out of high school almost fifteen years (excuse me, what?!). As I started composing this first post in my head, I’ve wracked my brain for any time in my life that that number has been as defining or significant as the last fifteen months have been and, as you can see from my measly list above, I didn’t have much luck. The truth is, nothing has tested me, taught me, stretched, or grown me more than the journey that began on March 15th, 2019.

Landry was born early in the morning weighing a perfect 7 lbs. 14 oz., a scheduled C-section following a long, not-so-pleasant pregnancy. I’m not one of those women that love being pregnant and I’ve always felt a little bit of guilt surrounding that, but the last trimester of my pregnancy with Landry only reiterated it. At 20 weeks, it was discovered that I had above normal amniotic fluid levels (polyhydramnios). Although it was uncomfortable – weighing 5-6 weeks ahead for my entire third trimester uncomfortable – it was nothing that my doctor was too concerned over. We kept a close eye on Landry through the end of my pregnancy with weekly ultrasounds and NSTs. Landry was not an active baby in the womb; she went long, worrisome stretches without movement so we had to regularly check in on her. In hindsight, the decreased movement combined with increased amniotic fluid was probably an indication of a genetic anomaly. I did question this a few times, but when my doctor wasn’t worried, I chose not to worry either.

When Landry was born, she did not cry for the longest time. OK, it probably wasn’t that long, but when you’re expecting that first sound of life from your new baby and it doesn’t come… it sure seems like a long time. I wish I could tell you more about these first few minutes of Landry’s life, but as emotions got the best of me, I was given something to calm down and I don’t remember them. I found out later that Landry did require some resuscitation at birth, but if a reason was ever known, it wasn’t given. Her first APGAR score was only 4, but she quickly rebounded to 7 and 8 at 5 and 10 minutes, respectively. The fog started to lift and I vaguely remember bits and pieces of the recovery room. As I took in the the tiny features of my sweet new baby, the trauma of her birth seemed to melt away. The rest of our stay in the hospital was filled with all the moments I had been looking forward to: Pete announcing to grandparents in the hallway that we had another girl, the perfect balance between visitors and alone time, sisters meeting for the first time, and just a general soaking up of all the newborn deliciousness.

sweet newborn Landry

We brought Landry home on a Monday, Chandler came home from my parents’ house on Tuesday, and Pete went back to work on Wednesday. The adjustment from one child to two went mostly better than I expected, but I will never forget the day Chandler stuffed a tiny, newborn Landry into her baby doll pram and rolled her into the other room before I realized what was happening. I was sure that I couldn’t handle this and Pete needed to come home for the day. Update: he did not come home for the day, Landry was fine, Chandler never did it again, and I was, in fact, perfectly capable of keeping them both out of harm for an entire day. The rest of her first few weeks were pretty uneventful. We did the doctor’s appointments, we did the first few outings with two kids, and we settled pretty quickly and easily into the new dynamics of a family of four.

One week turned into two weeks, blurred into six weeks, and before I knew it, we were two months into Landry’s life. Things seemed to still be going mostly as planned, but about this time I started noticing that Landry wasn’t starting to make any eye contact and that she had a bit of a “lazy eye.” Not a big deal to me at the time, but something that I brought up to our doctor at our two month well baby appointment. She was not concerned, said that it’s too early to tell much of anything in the eyes as they are still focusing. I left that appointment satisfied with the explanation and breathing a small sigh of relief. I decided that I would keep an eye on it (truly, no pun intended) and bring it up at our four month visit if I needed to.

It was in Landry’s third month that my worries about her development started and, along with it, came a sometimes overwhelming sense of uneasiness. By this time, Landry was not making any eye contact, not changing any facial expressions, not holding her head up, and still not moving her limbs much on her own. She was not starting to track objects or follow me out of a room with her eyes, her feeding difficulties were not improving, and she was so content that it was almost alarming. People would make comments that she’s the best baby they’d ever met or they didn’t hear her make a sound. This was true, but seeing it daily as her mom, it was starting to seem like something beyond just being a content baby. Please don’t get me wrong, we loved her and appreciated her for exactly what she was, a sweet, easygoing baby. She got plenty of love and attention, but I started to just get a gut feeling that things weren’t progressing as they should be with her development. My plan was to keep a list of my concerns and carry it with me to our four month check up so I could bring them up and not forget anything.

Our appointment rolled around (July 17th, 2019… don’t ask me how I remember that) and I carried Landry and my list into the office. I remember telling myself on the way in that I couldn’t minimize or forget to bring up my list of concerns. I even gave myself a pep talk: your concerns are valid, you’re not taking up too much of their time, if you don’t ask questions about her development, no one will. Little did I know, however, I didn’t have to bring anything up. The exam started and, in that moment, I saw the concern written all over our pediatrician’s face. All of what I thought I saw in Landry’s development, or lack thereof, was confirmed without me even saying a word. This, of course, was terrifying and, in the moment, I felt an almost paralyzing fear. I felt the urgency and gravity of the situation as our pediatrician rattled off referrals we needed: neurology, genetics, physical therapy, early intervention, ophthalmology. My head was spinning and eventually I cried, right there in the room. All I could hear was a big list of the things my baby wasn’t doing that she should be at this point. My perfect, sweet, content baby wasn’t developing typically and now, it was alarming to more than just me.

We left the office that day with the small beginnings of a game plan, referrals to doctors I never dreamed we’d need, and the support of the most amazing pediatrician and nursing staff. My list of concerns transformed quickly into a list of to-dos and follow up calls. And, I won’t lie, for a brief moment, my world felt a little bit like it was crashing down around me.

You always hear that hindsight is 20/20, but if you had asked me a year ago if I would ever look back and see the silver lining in that day, I would have laughed at you (or probably cried because I don’t remember being in the mood to laugh). But here I am, a year, almost to the day, after that first appointment and I can honestly say that I see the silver lining. I see a mom who needed to have her concerns validated, I see a mom who needed to know that she knows her baby better than anyone else, and I see a mom who needed to know that her opinion matters. Of course, that day I walked out of there terrified and, honestly, just sad, but with those initial emotions behind me, I can see that I actually walked out of there empowered. Empowered by my own mom and our pediatrician who, not only believed me, but believed IN me. What felt devastating at the time, and truly was – I would never write off those feelings – was actually the beginning of me becoming the woman and mother God intended me to be for my family. It was the first step, albeit a shaky, fearful one, on a journey that I never, in a million years, thought I would walk, but has turned out to be beautiful and rewarding as much as it has been difficult and exhausting. It’s a journey that I can’t wait to share with you.

I’m honored and excited that you’re here as I continue to tell the story of our road to Landry’s diagnosis and beyond. I plan to be an open book in hopes that our story can be a blessing to someone else. I absolutely will welcome and happily answer any questions about our journey or Landry’s diagnosis. If you want me to elaborate on anything at all, please just ask!

xo – Lindsay