Friday we had Will’s follow-up appointment with Craniofacial at Seattle Children’s. Here is the back story… Will was born with a condition called torticollis, which means twisted neck. His head tilted to the side and his face turned up as his natural/at rest position. We think he was wedged in my pelvis, causing him to get contorted. With physical therapy and wedges in his bed and car seat we were able to correct it. Along with the neck muscle issues, he had some facial asymmetry and head flattening, which are common with torticollis. In June (when he was 3 months old) we went to see Craniofacial to have them take a look. At that time she said she didn’t see anything that would warrant further tests and give it 3 months to see if it worked itself out.
At the follow-up, the spot above his forehead was not any better and his ears didn’t look level to her. So he is going to have a head CT to see if any of the plates in his head have prematurely fused. If they find that the plates have fused then we may be looking at surgery for them to open up the plates. The plates in the skull need to “float” to allow room for the brain to grow. She said that the plates don’t completely fuse until about the age of 20.
I am not sure when his CT will be; the scheduler is supposed to call us Monday. They will have to sedate him during the test, so he will not wiggle. Oh boy, another test.
I am not sure what to wish for. If they find the plate has fused that will explain his dent and they can fix it, but it means surgery. If they don’t find anything than will the dent get better and will his skull grow correctly.
We both are ready for things to start getting easier and for the doctors to stop finding more things wrong with our beautiful baby.