Emmery’s Story
Now that we have shared with everyone about Emmery’s diagnosis, and hosted our first two fundraisers, I’ve been asked by a few people to share more about Emmery’s story and background. I started this webpage so that those who wanted to learn more about our story would have somewhere to come and learn about Emmery while also being able to find all fundraiser information all in one place, so this seems like the best place to share this story. I actually wrote this blog post months ago, and haven’t had the courage to actually post it. But I think I’m ready now. So here is the story about my first born (by 3 hours!) child, Emmery Julia Morris.
March 12, 2019 I found out that I was pregnant. We had suffered a devastating miscarriage in April of 2018, so to say we were excited about this positive pregnancy test is an understatement. Although we were so excited, we were equally as nervous that this pregnancy would end in the same way the first one did. I got in early to have my first ultrasound because I was so scared of losing another baby.
March 28, 2019 was my first ultrasound. When I saw 2 sacs on that screen, I made eye contact with the ultrasound tech, and her look said it all. Twins. I got to hear both of their heartbeats for the first time that day. Britt wasn’t with me at the appointment, so I got to tell him at lunch that day. I wish I had recorded his reaction. We were SO shocked. As many of you know, my sister has twins. I thought there was no chance in the world that I would have twins too.
I had a great pregnancy (except for the nausea and vomiting.) I had no issues until August 26. I’m a nurse, and I was working full time at a very busy surgery center. It was a physically taxing job. I went into preterm labor at work (the day I started my third trimester.) I was in the hospital for 3 days, and they were able to stop my labor. I went home on bedrest until the babies were born.
On October 26, 2019, I woke up around 8am, and my water broke around 8:15am. I was 36 weeks and 5 days pregnant. Emmery was born at 1:23pm that day, and Maddox came nearly 3 hours later at 4:03pm. My OBGYN, who had been delivering babies for 36 years, told me that I set the record for her for the longest time between two twins. Not exactly the record that I was wanting to hold, but I was just grateful that I didn’t have to have Maddox via C section.
Maddox spent 2 days in the NICU because of hypoglycemia. Emmery spent 3 days in the NICU due to jaundice, hypoglycemia, and low body temperature. October 30 was one of the best days of my life when I had both of my babies at home with me, safe and healthy.
For the next 7 months I was floating on cloud 9. I was so happy and content. Everywhere I went people were telling me that they could tell I was so joyful and that they were so happy for me.
In May of 2020, around the time Maddox and Emmery turned 7 months old, we started to get a little concerned about the fact that Emmery wasn’t quite holding her head up as well as she should be and she wasn’t weight bearing yet. Her pediatrician noticed too and referred us to a physical therapist. She went to four PT sessions and “graduated” because she had already fixed the issues that the doctor was concerned about. Emmery had always hit her milestones on the back end of normal. Maddox had hit all of his on the front end of normal. I tried not to think too much about it, but my mom mind started to worry.
In July of 2020, we started to notice that Emmery didn’t reach for toys like Maddox did. She also looked like one of her eyes would cross slightly every once in a while. We decided to go ahead and get her in to see a pediatric ophthalmologist just to be safe. In August, we found out that she was very farsighted and that she has intermittent alternating esotropia, which means one of her eyes will cross when she is trying to focus on something. In a way, I was kind of relieved that she got this diagnosis because I thought that this was the reason she was a little bit behind. She got her glasses a couple of weeks later, and within a month of her having glasses, she was crawling and pulling up. I felt very relieved, and hoped that she would continue making these great advances.
At her one year checkup, I told the doctor that although she was moving in the right direction, I was still worried about her being behind. She could crawl, but she would fall often. Her poor forehead was constantly covered in bruises. We got a referral to a Developmental Specialist at Vanderbilt.
February 2021 The developmental specialist said that she didn’t think that there was anything wrong with Emmery, but that she was just a little behind. She told us that she thought she would catch up and that she didn’t think she would need to see us again.
February 2021 Emmery had an MRI that was normal.
June 2021 We find out I am pregnant with Brody! We were so happy. And yes we were VERY nervous that it would be twins again. Thankfully it was just one this time.
June 2021 We took her to a Geneticist at Vanderbilt. He told me that he didn’t think there was anything wrong with her (he told me this several times), but that she was just behind because she was small at birth and because she’s a twin. He wanted to still do bloodwork and tests just to confirm his diagnosis, though. The first round of bloodwork came back as normal. The second round of bloodwork came back as normal. The third test that he wanted to run took a 7 month fight with insurance to get them to finally run the test.
September 2021 We took Emmery to a pediatric neurologist at Vanderbilt because we were concerned that she was having absence seizures. He was the first doctor to tell us that he thought something was going on with her. He thought that she had a mutation in one of her genes that was causing her symptoms.
February 8, 2022 We got the (unexpected- our insurance still hadn’t approved the test) call from her neurologist He told us that she had something called KIF1A Associated Neurological Disorder (KAND.) He had never heard of it. It was the most devastating day of my life. I was 37 weeks pregnant, and I spent the next 2 months crying all day, every day. Those 2 months were the absolute lowest point for me. I was so depressed that I could barely even enjoy my newborn baby. We knew that Emmery was going to have a diagnosis, but KAND was far worse than anything we thought. She wasn’t THAT far behind. A neuroprogressive disorder. It doesn’t get worse than that. We got connected with KIF1A.org and with some other families that have kids with KAND, and I felt like that just made it worse. To see people’s 10 year olds and have to realize that that is how Emmery is going to look and act in 8 years was so so tough.
Part of what is so terrible about finding out you have a child with special needs is just having to face the fact that she won’t live the life that we dreamed. She won’t get married. She won’t have kids. She might not ever walk. She will be in Special Ed classes. She will probably live with us forever. She will probably die before I do. It’s a dark place to be.
The good part about getting connected with other families who have KAND family members is that they are the only ones who truly understand what we are going through. We have people to talk to and lean on. People to cry with and to celebrate every single tiny milestone with. And best of all, KIF1A.org has been around since 2017, and they’ve been searching for treatments and cures ever since then, long before my sweet Emmery was even thought about.
Thank you for taking the time to read this. Thank you for being there for us. Thank you for always loving on my sweet Emmery. I tell people this all the time: Emmery is the absolute sweetest child you have ever met. She has a smile that can melt a heart of stone. Everyone that meets her falls in love. I’m not just saying this because she’s my daughter. And if you’ve been lucky enough to meet Emmery, you know exactly what I mean.
