Our Toddler With Down Syndrome — Ellie’s First Three Years

Consciously or not, I always end up reflecting on my my yearly accomplishments and upcoming goals at the beginning of January. That combined with the fact that Ellie just turned three has me thinking about just how far we’ve come since receiving her Down syndrome diagnosis nearly four years ago. This seems like the perfect time to reflect on our journey with our toddler with Down syndrome–how we’ve grown throughout her life and what we are looking forward to with her in the coming year.

The Diagnosis

This was by far the hardest stage of having Ellie. I had never even been around anyone with Down syndrome and had horrible misconceptions of what our lives would be like.

If you’ve read our About page, you’ll know that we received Ellie’s diagnosis when I was only ten weeks pregnant. Even though I was older, we really only had prenatal testing done to determine if she would be a boy or girl. (I already had two boys and was so excited about the prospect of having a baby girl!) We received a phone call from a doctor in our practice informing us that our NIPT test came back positive for Trisomy 21. All I could think to say to him was, “But is it a girl?” He called her a “fetus” and gave us options for termination, which we didn’t even consider.

Of course this was in 2020, and I had to go to all of the extra doctors appointments, several in which they were determining whether or not she was actually going to make it, all by myself. Between Covid, family illnesses, and a pre-natal Down syndrome diagnosis, 2020 was a whirlwind of anxiety. There was very little joy in my pregnancy because there were so many unknowns with her health.

The First Year

Moms of kids with Down syndrome often tell those with a prenatal diagnosis, “It’s so much sweeter on the other side.” Others will tell you that none of the diagnoses will matter once the baby is in your arms. While both statements were eventually true for me, the first several weeks consisted less of newborn bliss and more of recovery and trying to figure out our new lives. While Ellie was only in the NICU for four days, she was still medically fragile, and the first several months were filled with appointments. In addition to the typical newborn appointments with the pediatrician, we saw a host of specialists to address several issues found during my pregnancy.

Toward the end of the first month, Ellie started showing her personality; she started smiling and was the easiest baby ever. She rarely cried, sometimes not even when getting her numerous blood draws, and due to her low muscle tone, her body would completely melt into yours when you held her. There was no way to not fall completely in love with this sweet, snuggly baby.

Once we got used to life with an infant, it was time to start early intervention services. Babies with Down syndrome all qualify for this, with some states paying for it and others not. Services offered often include OT, PT, speech, and play therapy, and the therapists typically come to the child’s home or daycare to make everything easier. In North Carolina, assistance with early intervention is income based, and we didn’t qualify. Due to both time and cost, we chose to just start with OT and PT and then added speech at one year. Ellie was three months old when we started OT and six months old when we started PT. (We would have started PT earlier, but we had a harder time finding a therapist for this.) Both therapists focused on core strength to help Ellie learn to sit up. (It’s hard to focus on fine motor skills when a baby can’t be in a seated position.) With their help, she started sitting when she was around eight months old, which was about the same time that she entered daycare so that I could go back to my normal teaching job. Just as I was getting used to having a newborn again, it was time to switch back to real life.

Age 1

Because Ellie was in a daycare setting, she started catching viruses. While all babies in daycare get sick a lot, Ellie’s illnesses would hit harder and last longer, resulting in several hospital stays. This is also when we started to realize that the sicknesses were really irritating her lungs. Each time we ended up in the hospital, we would get stuck there for over a week because her oxygen levels would drop while she was sleeping. We ended up with home oxygen and a daily steroid to try to keep her out of the hospital as much as possible.

Ellie also got tubes in her ears when she was one. Her team of doctors keeps a close eye on all of her health, and her ENT realized that she had no hearing on her left side because of fluid in her ears. Tubes fully restored her hearing.

In terms of development, we kept our OT and PT sessions and added speech. (Looking back now, we probably could have held off on the speech until she was two. She was nowhere close to speaking or communicating at that point.) OT sessions starting focusing on hand strength and finger isolations, and PT sessions were all about walking, which she started doing at 19 months.

Ellie was still the sweetest baby and continued winning over the hearts of everyone she met. Her brothers and other family members were completely enamored with her. She was a rockstar at daycare and was able to transition to her new daycare classes at nearly the same rate as her peers.

Age 2

Luckily, as Ellie’s body grew, some of her breathing issues improved; the mucus could just pass through her body easier. We still had a hospital stay due to RSV, but some of the other viruses she caught weren’t quite as dangerous for her. We were released from some of her specialists and only had to see some others once a year. (Initially we were seeing them all every three months.)

Ellie continued to develop with help from her early intervention specialists, but she did start to fall behind some of her peers, particularly in language. She could only say a couple of words while her peers were starting to say sentences. I also noticed that her friends were starting to play together while Ellie still developmentally preferred to play alone, and she was absolutely tiny compared to them!

Ellie was still a rockstar at school, though! The teachers and all of the kids absolutely loved her there, and the kids all yelled out her name when she came into a room.

Age 3

Ellie just turned three! Overall, she is doing really well with her health and development.

The biggest change that occurs at age three for kids with Down syndrome is that they age out of early intervention and move into the public school preschool program. I initially thought that this meant that Ellie would be riding a bus and going to our local school, but our school system actually sends itinerant services to daycare for students who are already in a setting that is serving them well. Many parents dread their pre-school IEP meeting, but ours went better than we ever could have expected. We prepared ourselves to receive minimal services due to staffing shortages, but the team decided on speech twice a week for 30 minutes each, PT once a week for 30 minutes, OT once a week for 30 minutes, and an additional teacher in her classroom twice a week for 40 minutes each. We also decided to keep her outside therapies since we have always paid for them, so she additionally gets OT, PT, and speech after school.

Language is still the area of development that she struggles with most, but she is starting to try to say more words and some phrases. Like most toddlers, she is obsessed with Ms. Rachel, and many of her words have come from trying to imitate her. In terms of fine and gross motor skills, Ellie is trying to run, kick, climb, and write. She loves art and playing outside, and tries to get into everything! We have also noticed that while Ellie is mainly her sweet self, she has developed a bit of a toddler attitude, which is great developmentally (although trying as a parent).

We are so excited to see what Ellie accomplishes this year! Our goals for Ellie this year are for her to continue to develop her language and for her to start working more with foundational preschool skills of colors, shapes, numbers, and letters. I am also excited for all of the new experiences we will have with her. We are planning a trip to Charleston and several travel lacrosse trips for her brother, and I am looking forward to more children’s museum, zoo, and aquarium trips with her. We are crossing our fingers that as her body continues to grow, she can remain healthy. Here’s to many new adventures in 2024!