Tuesday, April 10, 2007

Second Opinions

Ron and I took Peyton for a second opinion from a Neurosurgeon with Texas Children's Hospital today. She had previously seen a Neurosurgeon with Children's Memorial Hermann Hospital on three separate occasions. She saw him in the hospital after she was born and we followed up with him after a couple months just for a consultation. She saw him a second time when her Neurologist had concerns about the possibility of the bones of her skull fusing prematurely. She saw him the third time after she had her 11/30/06 MRI and CT Scan which showed a disturbing unexpected finding - there is a tightening at the cranial-cervical junction with decreased flow of cerebral spinal fluid. On each visit, the Neurosurgeon stated she didn't require surgery and probably would never but he was happy to be used for consultations as needed.
The 11/30/06 findings were disturbing enough to Peyton's pediatrician for her to recommend that we get a second opinion from a Neurosurgeon at Texas Childrens Hospital. While the first doctor tends to be more conservative, this one is apparently more aggressive.
I was quite worried going in to this appointment, fearing that she would have to have surgery after all. Fortunately, that is not the case. That said, the doctor is not without his concerns. He is concerned about the stability of her neck. He sent us for x-rays on her neck in normal position, tilted back, and chin tucked to her chest. If everything seems stable, we'll watch it to make sure it stays stable. If it is not, then that will require something to be done. However, the surgery to fuse the bones could not be done in her case because she is too young. The bones are just cartiledge right now and would not fuse. She'd have to be fitted with some sort of brace. Hopefully it doesn't get to that point. The Neurosurgeon ordered another MRI to be done at Texas Children's Hospital in 4-6 weeks. He'd like to see how Peyton brain development is progressing (or not progressing).
In other news...Peyton is going to have a sleep study done. I'm waiting for the call to set up that appointment. In the past couple weeks, we've been noticing that when she is sleeping, she will take a few really deep breaths and then just not breathe for several seconds. Then she repeats that pattern. She doesn't do it the whole time she is asleep or even every time she falls asleep, but it's a new thing we've noticed. I called her Pediatrician and she said it can be normal for babies her age to pause for up to 10 seconds, but with Peyton, you just can't be sure that that is what it is. She wants to be sure it isn't the progression of some neurological problem, so she has ordered a sleep study. I'm not sure at all when that will take place.
We've been invited to the Zoo this Saturday. Peyton's hearing teacher mentioned that the itinerant teachers (hearing and vision) are having a family day at the Zoo for their kids. It sounded like a good opportunity to maybe meet some people who at least know what it's like to have a child with hearing and/or vision problems. I'm sure no one there will be in Peyton's specific situation, but it'll be nice to finally meet some people here who know what it's like to have a special needs child.
As always, life is an adventure and we're just never quite sure where it's going to lead us!! We hope you are all well and that you had a wonderful Easter.

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