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CDKL5 Spotlight on Grayson

Meet Grayson, our CDKL5 December Spotlight! Mom, Kaylee, shares his story!

My husband and I battled unexplained infertility for 3 years. You can imagine the surprise we felt when those two pink lines popped up on the pregnancy test. We were overjoyed that our time had finally come to be parents. I had a pretty smooth pregnancy but around 37 weeks I developed high blood pressure. My OB thought it would be best to induce to protect the baby and me. Our beautiful son, Grayson, was born the day after a blizzard hit Indiana at the end of March. The moment was absolutely perfect and he appeared to be completely healthy. We were over the moon.

As the next month went on we noticed that Grayson didn’t love tummy time, he wasn’t able to track with his eyes, and he was sleeping a TON.

Being first-time parents we didn’t think anything about it. Around 2 months old, Grayson did something really odd a few times. I had no idea what a seizure looks like so I called his pediatrician and explained to them what my husband and I were seeing. They quickly called us back and told us to go to the nearest children’s ER because they believe he was experiencing seizures. Our hearts dropped. The tears began to flow. This was our new baby. The baby we wanted for 3 years. There were so many emotions.

When we were admitted to the ER they did a number of tests. It was incredibly scary. All the doctors and nurses running around trying to keep him calm. We felt in the dark. After the tests had been performed, we had to wait for the results. We stayed in the hospital for 3 days and all tests came back “normal”. So we left without knowing why he was having seizures. A couple of weeks later we met with his neurologist again and he discussed genetic testing. We put it off because we didn’t completely understand what all that would entail. After about 4 months of waiting and seizure medications not helping we finally decided to do genetic testing because we just wanted answers at this point.

November 8, 2018, we received what felt like the worst phone call in the world. You could tell by the neurologist’s tone of voice that the diagnosis wasn’t a good one. He abruptly said the term CDKL5. He told us not to google it and that he would send us more helpful information than google. Once we received the email from him we began looking at the packets. We could only look for a brief moment before we grabbed Grayson and each other and just began crying. At that moment time stood still.

Since the diagnosis, Grayson receives PT, OT, VT, ST, and Feeding Therapy. I’m his full-time caregiver and he’s a very busy boy but I love every moment of it! He has made so much progress with getting those interventions started early. Looking back a year ago, Grayson couldn’t even hold his head up, sit up, stand up, track with his eyes, focus on anything for an extended period of time, the list goes on. Now he is able to hold his head controlled, sit up for a few seconds at a time independently, stand with his AFO’s in his gait trainer, track objects and sometimes faces, and focus on people for a few seconds. Every milestone is so exciting. He’s 19 months old and not doing everything a typical 19 month old can do, but the progress he has made is indescribable.

Grayson has been on numerous seizure medications since he was 2 months old and some have helped minimize the seizures but they have never taken them completely away. He is still on a few medications but we have recently started the keto diet. We are still in the beginning stages so we haven’t noticed a significant improvement with his seizures, but we have noticed an improvement with his overall alertness so that’s been positive. Everything is a day by day process so I encourage other parents out there to just be patient. I know it’s difficult to do so I’m actually speaking this back to myself.

Finding out his diagnosis was very hard.

I’m not saying it’s any easier today, but we have come to terms with it and now we do everything we can to raise awareness! Once we learned to embrace the CDKL5 life our lives changed for the better. The CDKL5 community has been a huge help to us through facebook groups, clicking “add friend” with those parents that are going through the same thing, and others sharing their stories and experiences. It’s unlike any other family we’ve been a part of. CDKL5 stinks, but as long as we have hope we know we can get through anything.

Kaylee