Re: Update on 's Visit to CT

December 17, 2009

Glad it went well. Starting at 8 mo he should still get very good correction.

With 18-20mm of asymmetry you are probably a good candidate for a second band.

Please keep us posted on your baby's head.

-christine

sydney, 3.5 yrs, starband grad

>

> 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

>

December 17, 2009

I dread telling my husband that. Since we're paying out of pocket, that would

be a killer. We considered doing the STARband for that very reason, but in the

end went with CT. I guess we'll just hold out hope that one band will do it,

and if not then we'll cross that (expensive) bridge when we come to it.

will be less than a week away from his ninth " monthiversary " when he

gets his band.

> >

> > 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

> >

>

December 18, 2009

Just keep believing that will be in one band only! Luke was one week

away from 10 months when he started at 14mm and went down to 4mm within 3

months. You have a one month advantage and that is huge when it comes to

possible growth. It can happen!

> > >

> > > 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