Karsen was born, a full term, healthy baby on July 23, 2011. His birth story was not horrific, it was pretty textbook, except maybe the part where we almost had him in the car. He came into the world screaming and healthy. No signs there was ever anything wrong. The first 5 or 6 months of Karsen life was really rough. If he was awake, he was crying. When Karsen was 5 month old is when we began to notice something wasn't right, he wasn't using his left side at all. After weeks of research, googling and making an appointment with his Doctor (who told me it was nothing to be concerned about). We eventually met with a neurologist who confirmed what we had been worried about. It was one of the hardest days of my life. Karsen has spastic hemiplegic cerebral palsy. An MRI of Karsen brain confirmed, he had suffered a stroked. We still, to this day, don't know what caused it and I'm not sure if we ever will. We thought we had been through the worst of it but within weeks after his diagnosis, when he was 7 months old, he started having these spasms. So, back to the neuro we went. They ordered an EEG that same day we saw the neurologist. With in 20 minutes after the EEG Karsen was diagnosed with infantile spasms. And that is where our roller coaster began. We've had some struggles along the way but we've had some amazing accomplishments too.
I felt dizzy when I read this. My daughter was also born on July 23rd, 2011. Text book pregnancy, textbook labour (though very long! 78 hours). She also cried for the first several months of her life. Sounds so similar to your son. She does not have CP but has something different, Charcot Marie Tooth type 1B (suspected Dejerine Sottas Syndrome but hopefully not). She is also hypermobile.
ReplyDeleteI came across your blog as I was googling about AFOs, which we pick up next week.
Anyways, just wanted to say hi. Great blog.