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Joshua’s Story
"I found out I was pregnant at 3:03 am on July 18, 2007. I remember the date and time because it was the most surreal moment of my life..."
My husband, Ben, and I had tried for 2 years to get pregnant. We had seen infertility specialists; I had taken two different drugs and gone through all the tests. We had finally decided that we had had enough and that we were going to build our family through adoption. So you can imagine my surprise when I decided to take my last pregnancy test and up popped two lines. Two lines? Wait…two lines was pregnant. Right? So I re-counted. Definitely two lines. I was pregnant! For 15 minutes straight I sat in the bathroom and counted those two beautiful lines.
The next 9 months were idyllic. I had virtually no morning sickness, I felt great and loved being pregnant. All of our ultrasounds showed a healthy, perfectly developing baby. At 18 weeks, we found out that we were having a boy. We immediately started planning family trips, talked about what he might be when he grew up, and picked out a name. Our miracle, Joshua, was born four days early at 10:33am on March 28, 2008. He weighed in at 6 pounds, 12.5 ounces and was 20 inches long. He got 9’s on his apgars and passed his newborn hearing test. We were elated.
Two days later, just before were discharged, our pediatrician came in to visit. She told us that she’d like us to have an ultrasound and x-ray done of Joshua’s skull. She said that she was concerned about the size of Joshua’s head because it seemed a little inconsistent with his body size. She thought the sutures of his skull may be fusing prematurely. She assured us that it wasn’t an emergency, but a precaution. A few days later, we took our new baby back to the hospital for the tests. The ultrasound looked normal, but when the x-ray was taken, things took a different turn. The doctor who read the x-ray just kept saying, “I’m so sorry. I’m so sorry.” I had no idea why he was sorry, but I knew it wasn’t good. I clung to Joshua and cried.
Our pediatrician told us that the x-ray had revealed calcifications in Joshua’s brain. She said that only a few things would cause calcifications and they wanted to run more tests to see which infection it was. On April 7, 2008 the tests confirmed that Joshua had been born with CMV. Josh was immediately admitted to the hospital for a six week course of antiviral treatment, and Ben and I soaked in what this all meant. Words like cerebral palsy, microcephaly, brain damage, seizures, blindness, deafness swirled around us. We saw specialist after specialist and Joshua was subjected to so many tests. We got both good and bad news. The good news was that his vision was completely unaffected and his hearing loss was minimal in one ear. The bad news was that the calcifications were diffuse and throughout which predispose him to seizures and cerebral palsy later. We kept asking what all of this meant for Joshua and how he would be affected and always got the same answer…”we don’t know”. We were blessed to have our team of doctors work with us and after a week, we were allowed to take Joshua home and continue his treatment from home.
Joshua is now 3 years old. We were blessed with a second son in September 2010, and Josh has proven to be an awesome big brother. He loves Caleb and kisses him relentlessly. He loves to play peek-a-boo with his brother and is a great helper as well, handing Caleb toys and his pacifier as often as possible! Joshua loves to look at lights, feel the wind on his face, and be read any book he can get his hands on. He loves school buses and motorcycles, classic muscle cars and trucks of any shape or size. The sound of an engine makes him laugh every time! He’s a dare devil and loves to go as fast as possible in his wheelchair, swing as his as possible on the swings, and be tossed in the air – the higher, the better! He’s a shameless flirt and loves to cuddle. He’s laid back and easy going and hardly ever gets upset for long. He is stubborn and tenacious, going after what he wants with a venegance! He has a beautiful smile and a sweet temperament.
Joshua is intelligent and loves to show us what he knows, but he’s trapped in his body. He is “non-verbal”, but he can sign over 45 words, understands almost everything that is said to him, and he definitely makes his wishes known. He gets incredibly frustrated when he’s not being understood! He has been diagnosed with spastic quadriplegic cerebral palsy. He is able to sit independently if he is positioned properly, but he is not sturdy enough to be left alone. He can sniper crawl with the best of them, stand with support, and is using a wheelchair to be independently mobile and a walker to help him learn to take steps. His hearing doesn't seem to be deteriorating, and his vision remains strong. He is microcephalic and one of the sutures in his skull has begun to fuse prematurely. He receives speech therapy, PT, pool PT, OT, and special education services through our local early intervention program and he is enrolled in an integrated preschool for next year!
We are incredibly proud of both of our sons. Joshua and Caleb already have an amazing bond and they will certainly be a force to be reckoned with as they grow up! Josh has continued to amaze us each step of the way, and while the diagnosis of CMV changed our plans for a little while, it has not changed our dreams for our son. We will still plan family trips and talk about what he might be when he grows up. We believe that he can do anything and be anything he puts his mind to. Joshua is perfect just as he is and we know that he will do amazing things in his lifetime. We can’t wait to see what he surprises us with next!
- Shared by his mother, Jamie