Thinking back.

Lexi – thinking back.

Going to the hospital for Lexi’s fist CT scan, I was all butterflies. Terrell had given me and Lexi a blessing before we headed out, to calm my nerves and protect our sweet baby girl. We were going to find out if Lexi had crainiosyostosis; if she did, then we would be scheduling surgery in which they insert plates to keep her head from closing prematurely. Besides the prospect of that happening, I was also nervous that Lexi had a possibility of being put under for the first time. She was so little! She only weighed 8 pounds and 3.5 months old; any mother would be worried!

Luckily, Lexi was able to hold still enough sucking on what they called “baby crack” meaning sugar water. The actual scan went quickly but we waited in the CT room forever. I remember looking through the window between the CT machine and the computers where the doctors and radiologists were and seeing them pointing at the screen and discussing something. Honestly, I didn’t think much of it at that time, other than maybe the pictures from the scan weren’t clear enough. Little did I know, they were discussing something entirely different – something entirely unexpected.

Thinking back to when we exited the CT room, holding a little sleeping Lexi, some of it seems a blur, almost surreal in a way. The nurse came out and told us that they had found something on Lexi’s scan, and she felt like she needed to tell us what it was. She led us into a waiting room, sat us down and said that she would be right back. Apparently, she was headed out to talk to the radiologist who had read Lexi’s scan for one last time before talking with us. I remember looking at Terrell, who was holding our little girl and asking him what he thought the nurse was going to talk to us about. He shook his head. I looked down at the ground.

The nurse came back in, pulled up a chair, looked us in the eyes.

“We did not find evidence of crainiosyostosis, but we did find something. And I feel like it’s something you need to know right now. Technically I’m not allowed to tell you any findings – the doctor is supposed to call you and talk to over the phone, but I really feel like you need to know right now. Don’t mention that we told you prior to the doctor though, we could get in trouble.”

Neither Terrell nor I said anything. We just looked at her. I don’t know what was going through Terrell’s head, but I remember a million thoughts in mine.

They didn’t find crainiosyostosis! What great news! But….they found something? What the heck is it?! It must be bad – she’s sitting us down and telling us…she’s not supposed to tell us…but she is…what is it? This is my little girl! My little girl!!!!

“We saw something on her CT scan picture that caused us to worry. Lexi has a cyst on the left side of her brain. It’s not active, but is definitely evidence of something. There could be many reasons that she has a cyst. Most likely it means she had a stroke after she was born. It could also mean that she has the beginnings of a brain tumor, although that is very unlikely. But there is a cyst, and it is definitely there.”

She just told us that what they found on Lexi's brain was a cyst growing on the left side of her brain?! They are not sure what from or what caused it, but it's definitely there?!

She told me a million different things, but of course, my head was whirling, and I didn't hear everything she was telling me! I remember thinking…no, I don’t really remember thinking. They had just told me that my little girl has a cyst on her brain. Terrell and I never cried at the hospital, but we certainly did when we got home. Calling the family and repeating the information over and over again brought all new emotions. Realizing what it was. What it could mean.

Now it’s been a year and half since that July day. It’s hard to believe all that little Lexi has had to go through. We’ve made immense progress, and have learned so much.

Lexi is a Pediatric Stroke Survivor. She has minor cerebral palsy, and is classified as hemiplegic on her right side. She receives physical therapy at Orem Community Pediatric Rehabilitation, as well as occupational therapy there as well. She meets with a Pediatric Stroke Neurologist at Primary Children’s Medical Center in Salt Lake City and is part of pediatric stroke research study. Every three months, she receives Botox treatments in her muscles to help with range of motion and other right extremity function. She wears supportive braces on her leg/ankle called Dafo’s and has a thumb stretch splint to help increase her range of motion in her hand. There are many other things that little Lexi goes through as a result of her stroke: migraines, seizures, decreased sensitivity and feeling, as well as many emotional frustrations. She has had three CT scans, one MRI, and many other rehab and specialized services.

In the scheme of things, Lexi was incredibly lucky because of how localized her stroke was and how amazingly spastic children’s brains and muscular system is. As we continue to learn more and more about pediatric stroke and the consequences and conditions that are results of this event, we continually and avidly support Pediatric Stroke Awareness.