Navigating Aiden's Diagnosis

Leaving the NICU with a list a mile long of appointments, therapies, and procedures was so overwhelming! It is actually crazy how they just hand you a list and tell you these appointments are pretty much your life now. I honestly do not know how working parents do it. The first year of Aiden's life we averaged like 3 to 8 appointments every single week. I am blessed to be a stay at home mom, but Aiden's care has turned into what feels like a full time job!

The first few weeks following Aiden's discharge was VERY busy. We met with so many specialists including infectious disease, neurology, audiology, ophthalmology, pediatric surgery, pediatric orthopedics, nuerodevelopmental, pediatric gastrointestinal doctors, dietitians, on top of feeding therapy, occupational therapy, physical therapy, and pediatrician visits. The worst ones were the appointments I had to hold poor Aiden to get blood drawn and watch them try to find a vein! Not fun at all.

There was overwhelming amounts of information coming at us and we were just trying to process everything and understand. We also were trying to figure out our new normal with Aiden's situation and our 3 other kids. It was a huge priority for me to make sure they never felt like just because Aiden requires more attention and has more needs, that they were slipping through the cracks. We ultimately decided to enroll our two toddlers in preschool. It was not fair to them to have to sit through Aiden's appointments and therapies almost every day and it was very hard for me to bring them. Lets be honest, they were little and that was the last thing they wanted to be doing and I wasn't going to hold that against them. Putting them in preschool was the best decision. They absolutely love it and were and are thriving!

I'm speaking for myself here, but if I had to guess, I would think no one gets pregnant with the intent of having a child with special needs. I know I didn't. And because I had a healthy pregnancy and delivery, its the last thing I ever expected. I hate to use the words special needs because Aiden has a mild case of his diagnosis and it makes me feel guilty to even categorize him as such when I know so many other families have way worse situations. But in reality he does have special needs and requires more attention for his care.

The "wait and see" is probably the worst part about CMV. I do not have a definitive answer on what life will look like for Aiden. I have to take it day by day and see how he will be affected because every case is so different. I have found solace within the CMV community though, which makes it a little easier! Its just nice to know we aren't alone!

CMV caused Aiden to be born with microcephaly. Microcephaly is a condition where a baby's head is much smaller than expected. During pregnancy, a baby's head grows because the baby's brain grows. Microcephaly can occur because a baby's brain has not developed properly during pregnancy or has stopped growing after birth, which results in a smaller head size. As of now, we know Aiden has enlarged brain ventricles, most likely where the CMV virus settled. He is also developmentally delayed. Aiden is 16 months old currently. He did not start consistently rolling over until around 13 months, crawling at 14 months, he does not say any words but he sure does a lot of babbling!, he can not stand independently, and he does not walk.

Over the past year and after all of the doctors we've seen, we have been given a lot of good news! Aiden's vision is perfect which means CMV did not settle in his eyes! His neurologist is very happy with his development and said he is "exceeding expectations!" Aiden has been seizure free with the exception of one febrile seizure, but that is not related to CMV or microcephaly. We are thrilled with the progress he is making and love to see all the improvements he is making! I will continue to do everything in my power to make sure Aiden has the best care and tools he needs to succeed!