Update on 's Visit to CT

[Guest guest]

Just thought I'd post an update on how our appointment went at CT, for any who

are interested. I can't believe how fast we've flown through this process so

far, and I owe it to the great resources and helpful people in this group!

We ended up doing a head x-ray instead of a CAT scan to rule out

craniosynostosis. As expected, the sutures are still open. Yay for that! We

flew down Monday night to Southern California, where we thankfully have a lot of

family, and went to our CT appt. on Tuesday morning in Pasadena.

Our CT appt. was about what I expected, which is good since I had pretty high

expectations! Everyone there was very nice. The assistant who took pictures

and initial measurements came up with measurements that equaled 20 mm CVA. I

was shocked! I asked the tech to do them again herself, and she came up with 18

mm. I think by everyone's standards that's considered severe. Because most

people don't notice 's plagio (and a few can't see it even when I'm

pointing it out), I assumed he'd be on the mild-moderate end of the spectrum.

The neurologist said he thought he was mild-to-moderate but pointed out, " I've

seen a lot milder. " So I was prepared for moderate, but severe? That surprised

me. It made me realize that we may not have much of a chance of getting him

down into the normal CVA range. But in some ways it was good, because it left me

feeling completely confident that we need to do the band. If we'd been

borderline it could have been a hard choice.

The tech, who seemed extremely competent, expressed confidence that with a band

we would get noticeable improvement to the flat spot in back. She also said,

however, that because the ears are part of the lower skull, and the lower skull

growth slows down at about this age, that we may not see much movement in his

ear asymmetery. But I still hold out hope for some improvement! She actually

said she was surprised that his ear asymmetry wasn't much worse than it is given

how severe his flat spot is in back. He doesn't have much facial asymetry at

all, so that's good.

We went ahead with ordering the band and doing the DSI. The technology is

amazing, and the 3D imagery of him helped me see more plainly the shape of his

head (without his cute face and hair distracting from the head shape) and the

areas where we want to see some filling in and rounding out.

So now we wait, and hope and pray that once he gets into the band he will grow,

grow, grow! We get the band on the 29th, so from now through Christmas we don't

have to be worrying about it. And thankfully we'll be down in SoCal for a

week's vacation during the time of his fitting, so if we run into any problems

we'll be nearby and can go back in.

Lots of people on our plane flights oohed and ahhed at and talked to him

as people like to do with babies, and I kept wondering, " Will they act the same

when he's wearing a band? " I hope so, but I wonder. Hopefully some band

decorating will help.

Thanks for caring!

Mom to , 8 months old, soon to be in a DOCband