Re: Update on 's Visit to CT

[Guest guest]

Wow! That is great he is getting a helmet soon.

I'm surprised his measurements are that high. One thing I didn't

mention in my emails to you is that 's initial hand measurements

were 15mm. The scan on the same day was only 7mm to 8 and these are

the measurements we go by. So, it is possible Will's scan would not be

so high too. Hopefully, so. However, it doesn't really matter since

he is getting his band soon and that is the important thing. I'm

really happy for you that things went so quickly.

Let us know if you have any questions.

Good luck!

Kathy, mom to 18.5 months

blueskies0402 wrote:

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