D-Day (C-F Clinic)
Well, tomorrow is it. My husband and I are both nervous about what to expect at the cranial-facial clinic. We think Peter will be okay as far as the stresses-of-the-day are concerned. But you never know with autism-- so we're praying that he's cooperative.
I did talk to the coordinator of the clinic. This is how it works: we get to MCV (the Medical College of Virginia) in Richmond around 7:30 a.m., register, and then proceed to the neurology suites. There we'll camp out in the waiting room and wait to be called back to see a variety of specialists. Peter will see a psychologist, speech therapist, dentist, eye doctor, Ear, Nose and Throat doctor (ENT), etc. Then he will see the cranial-facial surgeon, plastic surgeon and neurosurgeon at the same time for thorough exam that they will do jointly. We'll break for lunch and when we come back the team of specialists will meet with the families individually to discuss their findings.
It's at this point they decide if your child needs the surgery (we've already been told that looks like Peter is "headed for surgery") and what the team's recommendations are for the surgery (how extensive).
Since Peter's metopic suture (the one down the middle of the forehead) closed early causing his trigonencephaly, fixing that is up for grabs. They may decide to fix it too in order to correct some of the triangular forehead look Peter has. His eyes are also a little widely spaced because of it.
If they decide to fix this and the sagittal suture (the one running down the middle of his skull) then the surgery will be extremely intense and recovery longer. The neurosurgeon seems to think that fixing the metopic is cosmetic but another doctor may feel that it will help Peter in another area-- so we'll see. But I doubt they'll want to go that far.
On the plus side, Tuesday is the meeting for Peter's IEP and the plan is still to mainstream him into kindergarten. To increase his social skills, his teacher is recommending school five days a week until the end of the school year. The only problem with this is that it will interfere with his private therapy so we have to rearrange that. All-in-all it will be a busy week.
I did talk to the coordinator of the clinic. This is how it works: we get to MCV (the Medical College of Virginia) in Richmond around 7:30 a.m., register, and then proceed to the neurology suites. There we'll camp out in the waiting room and wait to be called back to see a variety of specialists. Peter will see a psychologist, speech therapist, dentist, eye doctor, Ear, Nose and Throat doctor (ENT), etc. Then he will see the cranial-facial surgeon, plastic surgeon and neurosurgeon at the same time for thorough exam that they will do jointly. We'll break for lunch and when we come back the team of specialists will meet with the families individually to discuss their findings.
It's at this point they decide if your child needs the surgery (we've already been told that looks like Peter is "headed for surgery") and what the team's recommendations are for the surgery (how extensive).
Since Peter's metopic suture (the one down the middle of the forehead) closed early causing his trigonencephaly, fixing that is up for grabs. They may decide to fix it too in order to correct some of the triangular forehead look Peter has. His eyes are also a little widely spaced because of it.
If they decide to fix this and the sagittal suture (the one running down the middle of his skull) then the surgery will be extremely intense and recovery longer. The neurosurgeon seems to think that fixing the metopic is cosmetic but another doctor may feel that it will help Peter in another area-- so we'll see. But I doubt they'll want to go that far.
On the plus side, Tuesday is the meeting for Peter's IEP and the plan is still to mainstream him into kindergarten. To increase his social skills, his teacher is recommending school five days a week until the end of the school year. The only problem with this is that it will interfere with his private therapy so we have to rearrange that. All-in-all it will be a busy week.
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