Another surgery for Ben
Well thank goodness I went ahead and made an appointment with cranial technologies even though most of my doctors were telling me to wait. It turns out that Ben has coronal synostosis, which basically means the skull plate above his left eye has fused prematurely and isn't growing with the rest of his head.
The good news: It's fixable and it's not progressive, so once it's fixed we're done with that problem. It's also not associated with any syndrome that Ben might have, so it's an isolated problem.
The bad news: It's a "big surgery" according to his doctor. They're basically going to have to open his skull up, reshape the bones, and put it back together. Apparently there's a less invasive procedure that can be done, but it's not as effective - we're going to get a CT scan done soon and at that point we can decide which way we need to go.
His dr. said he usually does the surgery around 8 months. So Ben has a surgery scheduled for 8/5 to bring down his undescended testicle and then he'll have another one sometime in September. Poor baby!!
Here's a textbook picture of a baby with C.S.:
And here's a picture of Ben's head:
See how you can't even see his right eye because the forehead is bulging so much? Once again I'm so grateful to be living in Charlotte where there are so many great specialists. None of his other doctors picked this up, including his neurologist (Who, BTW, kept telling me to wait on going to cranial technologies.).
The good news: It's fixable and it's not progressive, so once it's fixed we're done with that problem. It's also not associated with any syndrome that Ben might have, so it's an isolated problem.
The bad news: It's a "big surgery" according to his doctor. They're basically going to have to open his skull up, reshape the bones, and put it back together. Apparently there's a less invasive procedure that can be done, but it's not as effective - we're going to get a CT scan done soon and at that point we can decide which way we need to go.
His dr. said he usually does the surgery around 8 months. So Ben has a surgery scheduled for 8/5 to bring down his undescended testicle and then he'll have another one sometime in September. Poor baby!!
Here's a textbook picture of a baby with C.S.:
And here's a picture of Ben's head:
See how you can't even see his right eye because the forehead is bulging so much? Once again I'm so grateful to be living in Charlotte where there are so many great specialists. None of his other doctors picked this up, including his neurologist (Who, BTW, kept telling me to wait on going to cranial technologies.).
posted by Carrie | 6:24 AM
1 Comments:
To the Jacksons - we are praying diligently for you all, especially Ben. We have been praying for many months now and will continue to do so. We are close friends and neighbors of your brother, Ron Jackson. Our Sunday School class has continually prayed for your family. We will stay in touch.
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