Re: Mia's Evaluation/Pictures

[Guest guest]

Well, shucks...Glad I could help!

Jake-2.5 (DOCBand Grad 9/08)

Jordan-5

> > > > >

> > > > > We had our evaluation at CT in Charlotte yesterday. It has been a

> > longggg

> > > > > week! Mia was having a repeat pH Study (Reflux) from Tuesday to

> > Wednesday

> > > > > morning in Atlanta (~1 hour each way), so there was already a lot of

> > > > > traveling going on... and after she finished yesterday morning, we

> > headed

> > > > > straight to Charlotte (~3 1/2 hours each way) for her evaluation, and

> > then

> > > > > headed home. We got back really late and then I had to scramble

> > around all

> > > > > morning getting 'the sister' to preschool and Mia to back to back

> > therapy. I

> > > > > need a long NAP!

> > > > >

> > > > > Anyway, everything went fine at CT. It was actually really nice to

> > SEE what

> > > > > I have been THINKING that I was seeing in photos and measurements. It

> > makes

> > > > > me feel like I'm not just crazy. Mia really made them earn their

> > keep,

> > > > > though. She has some sensory issues and really doesn't like being

> > touched,

> > > > > especially her head.. so she screamed hysterically the entire time

> > and all

> > > > > they were doing was trying to get photos and measurements! It made

> > things

> > > > > very challenging. I was shocked that they even got the photos that

> > they did

> > > > > because she barely stopped screaming the entire consult, and we were

> > there

> > > > > for close to 2 hours! I was also worried that because she was so

> > upset, the

> > > > > pictures wouldn't show her 'true' Torticollis, but they did for the

> > most

> > > > > part. It's a bit worse in real life, but they saw that 'in person' -

> > so it

> > > > > really doesn't matter.

> > > > >

> > > > > Her actual Plagiocephaly is moderate. If it was JUST that, I wouldn't

> > be so

> > > > > concerned and I can't say that we would band. In fact, I can almost

> > > > > certainly say that we wouldn't. She will have hair that will mostly

> > cover

> > > > > it, and it isn't severe by any means. It's to the right, so it's

> > difficult

> > > > > to get good photos of, and it's a bit worse than it appears - but not

> > by

> > > > > much. They said that the flatness straight across is mostly because

> > of her

> > > > > fontanelle that is still open, and that it's something we should

> > watch.

> > > > >

> > > > > But. And there's always a 'but', right? Because of the

> > > > > Torticollis/Plagiocephaly, she has some significant asymmetry going

> > on..

> > > > > which is what I was really concerned about going in. I had definitely

> > > > > noticed that her right ear seemed shifted forward.. but I had a hard

> > time

> > > > > differentiating what was 'real' and what was her mommy over-analyzing

> > > > > things. So it was really comforting to have someone else see it, too.

> > So my

> > > > > biggest concerns were her right ear being more forward than the left

> > and her

> > > > > left eye seeming a bit smaller/weighed down (because there is more

> > 'head' on

> > > > > that side). And those things were confirmed. The left side of her

> > forehead

> > > > > is flatter than the right and her right ear/eye/cheek are anterior to

> > the

> > > > > left. One side of her cheek/jaw is also shifted, but I can't recall

> > which

> > > > > side. I want to say that it's the right, but I'm not sure.

> > > > >

> > > > > And for those reasons, they think that she absolutely needs a band.

> > Clearly,

> > > > > it's a cosmetic issue... I don't really want her to be insecure about

> > having

> > > > > her hair up because one ear is closer to her face than the other.. or

> > > > > because one eye is smaller. It would also make things like getting

> > glasses

> > > > > that fit complicated. And it could absolutely cause jaw issues

> > later... I've

> > > > > had my fair share, including braces as an adult - so that's not

> > something we

> > > > > need. So I left the visit pretty certain that we would go ahead with

> > it.

> > > > >

> > > > > But I still have some hestiations. I talked to her SLP

> > (speech/feeding

> > > > > therapist) about it this morning and found out that she had

> > Torticollis as a

> > > > > child, including surgery in the first grade to loosen the muscle! I

> > had no

> > > > > idea! She said that she still has issues with finding glasses that

> > fit on

> > > > > her ears and nose correctly, but that otherwise it doesn't bother her

> > much -

> > > > > and she looks 'normal' to me. She seemed to agree with my outlook

> > (that I

> > > > > stole from someone here! thank you, it's helped tremendously!) that

> > we will

> > > > > never regret doing it, but may regret not doing it. I also asked her

> > OT what

> > > > > she thought, and she seemed to agree also... though she gasped at the

> > > > > pricetag (and insisted that there were cheaper options) and she also

> > said

> > > > > that usually kids that they see there with helmets have much more

> > severe

> > > > > Plagiocephaly. Again, if she didn't have the facial asymmetry, I

> > wouldn't be

> > > > > too concerned about her flatness. It's the facial shift that really

> > concerns

> > > > > me. She recommended that I ask her PT what she thought.. since she

> > knows

> > > > > much more about Torticollis, but her PT is usually all rainbows and

> > sunshine

> > > > > and writes most things off because they *could* be worse , so I don't

> > think

> > > > > her opinion will really alter mine.

> > > > >

> > > > > So while I was pleased with our appointment for the most part, I

> > still have

> > > > > some concerns/questions. If anyone has any insight, please share!

> > > > >

> > > > > 1) What ARE the other options, outside of CT? I know that there are

> > other

> > > > > companies, but after researching it a bit - it seemed like CT was

> > much more

> > > > > reputable and had better success. Are the other companies/types of

> > bands

> > > > > significantly cheaper? The price won't hold us back if she needs it

> > (it's

> > > > > $3k for us since we're military), but if it's like 'buying the name

> > brand

> > > > > even though the store brand works fine', I'd like to know. I don't

> > think

> > > > > that's the case, but I want to ask anyway! Cranial bands are a

> > Tricare

> > > > > exclusion, so I'm not sure it's worth the trouble in appealing them a

> > > > > hundred times.

> > > > >

> > > > > 2) Can facial asymmetry ever correct itself without a band? Since Mia

> > has

> > > > > developmental delays, she is not yet sitting and probably won't be

> > anytime

> > > > > soon. She does spend a lot of time on her tummy, but the

> > > > > Tort/Plagio/Asymmetry has definitely worsened even with that.

> > > > >

> > > > > 3) If she does a band and her facial asymmetry corrects, how common

> > is it to

> > > > > have it occur again after removing the band?

> > > > >

> > > > > 4) Could someone help me understand her measurements? I can't

> > remember which

> > > > > mean what!

> > > > >

> > > > > Traditional Cranial Vault Asymmetry: 5

> > > > > fzR-euL: 138

> > > > > fzL-euR: 133

> > > > >

> > > > > Cranial Vault Asymmetry: 8

> > > > > fzR-OcpL: 148

> > > > > fzL-OcpR: 140

> > > > >

> > > > > Skull Base Asymmetry: 10

> > > > > sn-tL: 83

> > > > > sn:tR: 73

> > > > >

> > > > > Also, when you have your DSi photos done, do you usually notice that

> > the

> > > > > measurements are the same as the manual ones, better, or worse?

> > > > >

> > > > > I think that's it. Other than the inevitable, 'if you were in my

> > shoes, what

> > > > > would you do?' question! I am uploading her scans under M shortly.

> > > > >

> > > > > Kim

> > > > >

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