When kids with Down syndrome are around three years old, it is recommended that they get some x-rays to determine the formation of their spine. More often than not, the kids are diagnosed with atlantoaxial instability.
This means that there is too much movement in their upper spine, and that they have to be careful jumping on trampolines or doing somersaults. For kids like Ellie who have to have surgeries that require general anesthesia, there is also a little bit of risk involved with intubation and over extension of her neck.
This week I took her to Arkansas Children’s Hospital for these x-rays, among a number of other errands we needed to attend to up there. In between an immune-boosting shot and some bloodwork, I took her over to radiology to “take some pictures.” Ellie loves a photo opportunity and I thought that explaining it to her this way would make sitting still more fun.
“Cheeeeese!” she yelled each time the tech pushed the button to take the x-ray, leaving the entire radiology staff laughing.
Then Ellie met a baby girl in the waiting room. Her parents were new to their daughter’s diagnosis and Ellie’s smile and desire to help feed and hold their baby made them smile. Watching her communicate with me through sign language helped them feel comfortable enough to ask me questions about the positives of her diagnosis.
When we got to the hospital that morning, Ellie decided to bring her baby doll. Per her recommendation, the baby doll was subjected to the same screening process of a temperature check at the front door. She also got a sticker and a mask, just like Ellie had gotten, bringing a little sunshine to the workers at the front desk.
Ellie cried after her shot, but the nurse took her to the treasure chest where, with her signature absolute and undeniable joy, she chose a sequined bracelet to take home. Her excitement and audible gasp over the find made the nurse forget about the tears and poked-out pouty lip that she had caused earlier.
The doctor called me yesterday. He had read the report and wanted to let me know that Ellie, in fact, had markers for this atlantoaxial instability. This diagnosis is not really surprising considering how floppy and unstable all of her muscles and systems have been up until this point.
“We have a lemon,” I thought to myself when he told me about the new things that I needed to add to my already very long list of “Ellie Worries” that I can reference when I get bored.
A lemon, in reference to a car, is a vehicle that turns out to have several manufacturing defects that affects its safety, value or utility. There are laws out there meant to protect consumers when they purchase something that cannot be repaired or restored to what they thought they were buying.
It may sound harsh, coming from her mother, but I can’t help it. Everything, when it comes to Ellie, is a little off, needs some repair or is delayed.
When I decided that I wanted to have another baby, I wanted it to be a girl. I wanted her to be named Ellie and wanted her to be healthy. I thought that was what I was “purchasing” when I decided to bring her into my life. That is not what I got.
Lucky for me, I got a lemon. And every day I get to watch her share so much lemonade.
Sign up here for email delivery of Typically Not Typical.
typically not typical 
2 Comments Add yours