Ava’s Journey by Christina Gajewski

My husband and I have been together almost fifteen years. We had our eight year old son very early on in our marriage and we were happy with that. But then we realized our family would be complete with one more child. We were so excited to find out we were going to have another baby, and a girl too!

Ever since I was a little girl myself I dreamed of having a little girl with long light brown hair. And coincidently that’s what I have now. A very spunky, funny, smart, and adorable three year old little girl named Ava.

My pregnancy and child birth with Ava were both pretty easy. No complications. Her first few months were great other than the not sleeping part. When Ava was about to turn six months old I noticed what I thought was shivering and thought nothing of it. The next day she was doing but more often. I also became very scared because upon waking up from her nap I would usually hold her and feed her. Her head would just drop. I called her pediatrician very worried and he told me to keep an eye on her next day if still doing it call me. He said they are either seizures or she is having acid reflux.

But the “shivering” and head drops kept happening and what seemed like more often. Luckily her pediatrician had seen Infantile Spasms long ago on a former patient. He had us go to a hospital with a wonderful Pediatric Neurology department. We had so much testing done. All the poking with needles, an MRI, an EEG, an ultrasound. When her Neurologist told us what she had, Infantile Spasms, we cried together. We were very sad for her. We didn’t know what to do or what to expect. We were told she had the “good” kind or cryptogenic. Meaning there is no known cause. This kind is easier to treat.

We were told she would most likely always just have a speech delay. We ended up getting released from the hospital two days later with a visiting nurse set up to visit our house to help us learn how to inject steroids into Ava, six month olds upper thigh. Having a six month old baby on steroids is no picnic and I hated doing it. But after a week miraculously her spasms and seizures stopped. She still till this day has not had one single spasm or seizure. All of her EEGs have come back normal.

However we have had MANY both in home and outpatient speech, occupational, and physical therapy appointments along the way up until now. The seizures she did have left her with a significant speech delay and low tone in her right hand, leg, and foot. But every day I wake up and I care for her and love her just as I would my son or anyone else.

I believe things happen for a reason, and this was to make us all closer. To make me a better Mother. A stronger Mother. I selflessly wake up every day and care not only for Ava and all of her special needs but my older child as well. This experience has taught me to always put others first before myself because the outcome is truly rewarding. It hasn’t been an easy last three years but there have been so many amazing moments along the way. Now Ava is turning three and starting special education preschool in January. She is Amazing Ava!

Submitted by Christina Gajewski