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