Within 24 hours we were being rushed to the Children's Hospital and told a range of possibilities. Benji's heart was broken. The easiest way to put it. Not the worst condition out there, not the best either.
Benj was born with CoArctation of the Aorta(CoA), Bicuspid Aortic Valve (BAV), Stenosis, and a Patent Ductus Arteriosus (PDA). At a week of age, he had closed heart surgery where the surgeon performed a subclavian flap to repair the CoA and also closed the PDA. Since then the BAV and stenosis his being monitored regularly.
The peculiar thing about children born with congenital heart defects (CHD) is that it is not JUST their heart that is affected. Benj has had to overcome hypotonia (lack of tone), apraxia, lack of motor skills both fine and gross, and more. He was almost three before he was considered verbal. While milestones were met, they were delayed. In the first three years of Benji's life, there were SO MANY therapy appointments. We were always either going to therapy or it was coming to the house. That extensive therapy is why Benj is the overcomer he is today.Benj still has to work hard. There are executive function issues, an ADHD diagnosis, anxiety, migraines, food intolerances, and sensory processing disorder. But he does work hard.
Benji loves Jesus. Loves to read. Loves video games. Loves learning to program. Loves to be a kid. Has a great imagination. Is so stinking intelligent he gives mom and dad a run for their money. This past year he has made friends that have similar interests. He also goes to music class at The Quest Center.
Our big thing this year is we are going to do the Nashville Congenital Heart Walk on June 17th.
Thank you for celebrating my birthday with me!
