Picture of Paul before the MRI :)
So, this would be P.J's eighth MRI in the Past year. Unfortunately, even with the best MRI it is near impossible to tell what is damaged brain and what isn't...but we will see what this MRI says, we should know in a few days. This is how we have understood it; Since his brain is still developing at his age it is really hard to see the dysplasia--as he ages it will become more and more visible---Problem is the longer we wait to stop the problem areas the more damage could be done and the ability to recover from a brain surgery is more difficult. Plus at this point his brain is a ticking time bomb....we don't know how bad this could truly get or when it could happen. Anyway, we are waiting on his PET scan here in a couple of weeks to get a better idea of what is going on inside the cute little head of his :)
After the MRI...not the happiest coming out of sedation!
Hi Marcie,
ReplyDeleteI can't tell you how shocked I was when I got your message. As I read through your precious baby's story, I can't believe how similar his situation is with our daughter! The location of the cortical dysplasia, the surgeries, our same surgeon, all the same meds that they're on and the fears and anxieties your family went through... It is all too familiar. Your family has really gone through so much, and I'm so sorry baby paul is still battling seizures. If there is anything I learned from our experience so far is that kids are so resilient! More than half of Grace's brain on the right side was removed, she was completely paralyzed on the left side after her surgery, and now, 4 months later, she is almost starting to walk. There is always a hope for cure with cortical dysplasia, and your baby is already a miracle! I admire your courage, strength and patience as a mom during these difficult times that test us. Our family will be praying for baby paul!!!!
Please, please let me know if there's anything I can do for you to offer you support and encouragement. My email is: chen.christina@gmail.com. We live in Rochester, so if you're ever in the area, please don't hesitate to contact us and would love to help in any way possible
God bless,
Christy
Christy,
DeleteYou have no idea how shocked I was also! This disorder is rare and seems to always be so different for everyone and to find that our children have SO much in common with it is crazy! I stumbled upon your blog and couldn't help but notice how amazingly your daughter seems to have come along after the surgery. Children are so strong! You have no idea how comforting for me it is to know how well your daughter is doing...it gives me hope that hopefully my son can fight through the set backs that are going to come.
Thank you so much for the kind words....prayer got him this far and we believe that prayer is the strongest medicine. I think as parents of children going through things like this we seem to learn the biggest lessons...it has drastically changed me...in the best ways!
I love your blog and will be checking in on it often, it brought a big smile to my face seeing your sweet Grace's updates...she looks to have come such a long way, nobody would ever know by looking at her the battle she went through not so long ago. Your daughter and my son are nothing short of miracles :)
Wishing you and your family the best,
Marcie