Re: Blythe is all done @ 6 wks -Wow! Going to See Hobar Tomorrow

[Guest guest]

,

Congrats! That gives me hope. Not that my Amethyst has the same kind

of plagio. I have no idea how long hers will take to " fix " .

We're going to see Dr. Hobar tomorrow am for the final verdict. We

went in a couple of months ago, and they wanted us to wait til she was

about 5 mos old before making the final decision. So.....tomorrow is

the big day. And we've got a big drive of about 5 hours ahead of us.

Sounds like a very similar boat that we're about to be in. Luckily,

I've only got one baby to drive that trip with. And her daddy is

coming with me tomorrow. If Dr. Hobar and his colleagues say, yep,

band her...we're going to spend the night in Dallas and have her

casted in the morning. Did you stay at the Bradford by any chance.

Sounds like it will be a lovely place.

Anyway, congrats on such a speedy treatment! It give me lots of hope!

Jocelyn

Mom to Amethyst

> >I am blown away! Just seems like we got here and we are done. And I

> > though scaphy was supposed to be a difficult correction. HA!

> >

> > We banded Blythe at 4.5 months for scaphocephaly w/ facial

> > asynmmetry in a SIDE-OPENING DOC band. At the time, we thought she

> > would probably need 2 bands, the first (side-opening) to correct the

> > asymmetry (they can't do the " normal " scaphy band with asymmetry)

> > then a second band to give her some much needed width and soften the

> > sharp shelfing on the back of her head.

> >

> > By 3-4 weeks it was clear that she was getting a lot of width with

> > the side opening band. By 4 weeks, out therapists and I didn't think

> > she would need the second band. We went back to the specialist (Dr

> > Hobar in Dallas) at 5 weeks, who thought she looked great. If we

> > wanted to, we could get a second band, but he was happy with the

> > result at this point.

> >

> > I'd say of 100% correction, we have 90%-95%. Doesn't seem worth it

> > to do a second DOC Band for marginal correction when if you didn't

> > know what to look for, you couldn't see a problem. Her face is a

> > little narrow at the temples, but the width behind her ears is fine

> > I think with hair, it is a non-issue. Maybe if we lived closer to

> > the CT office and our insurance was paying 100%, I would have

> > considered a second band. I don't know. As is, I have to drive 4.5

> > hours with 6 mo twins and spend the night in Dallas once a week.

> > That has been a big drain on me and our family.

> >

> > So, anyway, we did all our exit stuff at 6 weeks. I guess that is

> > it. The weird thing is that I don't know what to do with myself now.

> > She was born with a " funny " head. We had out first CT (to check for

> > fluid) at 8 weeks. By 2.5 mo, we'd been referred to a specialist to

> > discuss craniosynostosis. After 2 months of thinking she had

> > craniosynostosis, finding a surgeon, finding ANOTHER surgeon, CTs,

> > road-trips to Oklahoma City then Dallas we are told we just need a

> > helmet and are referred to CT. You all know the rest of the story--

> > complete with weekly adjustments requiring 5 hour one-way drive and

> > hotel stay. This headshape thing has been such a part of our lives

> > for my daughter's WHOLE LIFE! Who knows, maybe the silver lining is

> > that I didn't have the time/luxury to freak out about having twins

> > and a 2 yr old. I was too busy just dealing with all of this.

> >

> > As time passed, I probably won't check in as much, though I am sure

> > I'll lurk here and htere. If anyone has a child with scaphy, who is

> > banded at a young age, is from Oklahoma, or WHATEVER plaese email me!

> >

> > I've posted some " after 6 weeks " pictures in Blythe's file on the

> > plagio kids section . CT is sending me my exit photos and I'll do a

> > proper before and after when those come.

> >

> > Thank you all for eveything!!!

> >

> > Tulsa, Oklahoma

> > Hardin (Hardy) 2.5 yrs

> > Charlotte Maeve and Blythe (my DOC GRADUATE @ 6 wks!!) 6

> > mo.

[Guest guest]

Good luck w/ the Children's Craniofacial Team. They are such a nice

group of poeple.

The Bradford is nice, but here is an even better deal-- On

Priceline.com if you say you want a 4-star hotel in the North

Dallas/Galleria area for $45, they will put you in one of 2 places.

Either you are in the Hilton at Lincoln Center, a VERY ritzy hotel on

the same access road at CT (maybe 3 minutes away) or the Norht Dallas

Hilton Suites which are across LBJ Parkway, also within 5 minutes

from CT. The Suites are nice because you have a fridge and you can

walk across the street to the Galleria. Both are very nice places to

stay.

After fees, the charge on priceline is about $55 + parking ($4 at

Suites, $8 at Lincoln Center) Anyway, after 10 trips, that is ALWAYS

what I did and the hotels were both excellent.

I hope everything goes well. Have a safe trip and let us know how it

goes.

--- In Plagiocephaly , " JocelynRM " <jocelynrm@e...>

wrote:

> ,

>

> Congrats! That gives me hope. Not that my Amethyst has the same

kind

> of plagio. I have no idea how long hers will take to " fix " .

>

> We're going to see Dr. Hobar tomorrow am for the final verdict. We

> went in a couple of months ago, and they wanted us to wait til she

was

> about 5 mos old before making the final decision. So.....tomorrow

is

> the big day. And we've got a big drive of about 5 hours ahead of

us.

> Sounds like a very similar boat that we're about to be in.

Luckily,

> I've only got one baby to drive that trip with. And her daddy is

> coming with me tomorrow. If Dr. Hobar and his colleagues say, yep,

> band her...we're going to spend the night in Dallas and have her

> casted in the morning. Did you stay at the Bradford by any chance.

> Sounds like it will be a lovely place.

>

> Anyway, congrats on such a speedy treatment! It give me lots of

hope!

>

> Jocelyn

> Mom to Amethyst

>

>

> > >I am blown away! Just seems like we got here and we are done.

And I

> > > though scaphy was supposed to be a difficult correction. HA!

> > >

> > > We banded Blythe at 4.5 months for scaphocephaly w/ facial

> > > asynmmetry in a SIDE-OPENING DOC band. At the time, we thought

she

> > > would probably need 2 bands, the first (side-opening) to

correct the

> > > asymmetry (they can't do the " normal " scaphy band with

asymmetry)

> > > then a second band to give her some much needed width and

soften the

> > > sharp shelfing on the back of her head.

> > >

> > > By 3-4 weeks it was clear that she was getting a lot of width

with

> > > the side opening band. By 4 weeks, out therapists and I didn't

think

> > > she would need the second band. We went back to the specialist

(Dr

> > > Hobar in Dallas) at 5 weeks, who thought she looked great. If we

> > > wanted to, we could get a second band, but he was happy with the

> > > result at this point.

> > >

> > > I'd say of 100% correction, we have 90%-95%. Doesn't seem worth

it

> > > to do a second DOC Band for marginal correction when if you

didn't

> > > know what to look for, you couldn't see a problem. Her face is a

> > > little narrow at the temples, but the width behind her ears is

fine

> > > I think with hair, it is a non-issue. Maybe if we lived closer

to

> > > the CT office and our insurance was paying 100%, I would have

> > > considered a second band. I don't know. As is, I have to drive

4.5

> > > hours with 6 mo twins and spend the night in Dallas once a week.

> > > That has been a big drain on me and our family.

> > >

> > > So, anyway, we did all our exit stuff at 6 weeks. I guess that

is

> > > it. The weird thing is that I don't know what to do with myself

now.

> > > She was born with a " funny " head. We had out first CT (to check

for

> > > fluid) at 8 weeks. By 2.5 mo, we'd been referred to a

specialist to

> > > discuss craniosynostosis. After 2 months of thinking she had

> > > craniosynostosis, finding a surgeon, finding ANOTHER surgeon,

CTs,

> > > road-trips to Oklahoma City then Dallas we are told we just

need a

> > > helmet and are referred to CT. You all know the rest of the

story--

> > > complete with weekly adjustments requiring 5 hour one-way drive

and

> > > hotel stay. This headshape thing has been such a part of our

lives

> > > for my daughter's WHOLE LIFE! Who knows, maybe the silver

lining is

> > > that I didn't have the time/luxury to freak out about having

twins

> > > and a 2 yr old. I was too busy just dealing with all of this.

> > >

> > > As time passed, I probably won't check in as much, though I am

sure

> > > I'll lurk here and htere. If anyone has a child with scaphy,

who is

> > > banded at a young age, is from Oklahoma, or WHATEVER plaese

email me!

> > >

> > > I've posted some " after 6 weeks " pictures in Blythe's file on

the

> > > plagio kids section . CT is sending me my exit photos and I'll

do a

> > > proper before and after when those come.

> > >

> > > Thank you all for eveything!!!

> > >

> > > Tulsa, Oklahoma

> > > Hardin (Hardy) 2.5 yrs

> > > Charlotte Maeve and Blythe (my DOC GRADUATE @ 6

wks!!) 6

> > > mo.

[Guest guest]

Wow! That's a MUCH better deal. I'll check it out right now. Thanks

for the hot tip!

Jocelyn

> Good luck w/ the Children's Craniofacial Team. They are such a nice

> group of poeple.

>

> The Bradford is nice, but here is an even better deal-- On

> Priceline.com if you say you want a 4-star hotel in the North

> Dallas/Galleria area for $45, they will put you in one of 2 places.

> Either you are in the Hilton at Lincoln Center, a VERY ritzy hotel on

> the same access road at CT (maybe 3 minutes away) or the Norht Dallas

> Hilton Suites which are across LBJ Parkway, also within 5 minutes

> from CT. The Suites are nice because you have a fridge and you can

> walk across the street to the Galleria. Both are very nice places to

> stay.

>

> After fees, the charge on priceline is about $55 + parking ($4 at

> Suites, $8 at Lincoln Center) Anyway, after 10 trips, that is ALWAYS

> what I did and the hotels were both excellent.

>

> I hope everything goes well. Have a safe trip and let us know how it

> goes.

>

>

>

[Guest guest]

Well....all went well with the craniofacial team. Dr. Hobar

recommended that we NOT get a band. He said, " if she were my

daughter, I wouldn't do it. " I'm so relieved. Although, I feel like

we spent so much time agonizing over all this. I guess the

repositioning and physical therapy and stretching have all helped.

Oh, and the Room at the hilton suites was lovely. , thanks

for the recommendation! We got to check out the Galleria. It's sort

of under construction, but the window-shopping was kind of fun.

Jocelyn

> > ,

> >

> > Congrats! That gives me hope. Not that my Amethyst has the same

> kind

> > of plagio. I have no idea how long hers will take to " fix " .

> >

> > We're going to see Dr. Hobar tomorrow am for the final verdict. We

> > went in a couple of months ago, and they wanted us to wait til she

> was

> > about 5 mos old before making the final decision. So.....tomorrow

> is

> > the big day. And we've got a big drive of about 5 hours ahead of

> us.

> > Sounds like a very similar boat that we're about to be in.

> Luckily,

> > I've only got one baby to drive that trip with. And her daddy is

> > coming with me tomorrow. If Dr. Hobar and his colleagues say, yep,

> > band her...we're going to spend the night in Dallas and have her

> > casted in the morning. Did you stay at the Bradford by any chance.

> > Sounds like it will be a lovely place.

> >

> > Anyway, congrats on such a speedy treatment! It give me lots of

> hope!

> >

> > Jocelyn

> > Mom to Amethyst

> >

> >

> > > >I am blown away! Just seems like we got here and we are done.

> And I

> > > > though scaphy was supposed to be a difficult correction. HA!

> > > >

> > > > We banded Blythe at 4.5 months for scaphocephaly w/ facial

> > > > asynmmetry in a SIDE-OPENING DOC band. At the time, we thought

> she

> > > > would probably need 2 bands, the first (side-opening) to

> correct the

> > > > asymmetry (they can't do the " normal " scaphy band with

> asymmetry)

> > > > then a second band to give her some much needed width and

> soften the

> > > > sharp shelfing on the back of her head.

> > > >

> > > > By 3-4 weeks it was clear that she was getting a lot of width

> with

> > > > the side opening band. By 4 weeks, out therapists and I didn't

> think

> > > > she would need the second band. We went back to the specialist

> (Dr

> > > > Hobar in Dallas) at 5 weeks, who thought she looked great. If we

> > > > wanted to, we could get a second band, but he was happy with the

> > > > result at this point.

> > > >

> > > > I'd say of 100% correction, we have 90%-95%. Doesn't seem worth

> it

> > > > to do a second DOC Band for marginal correction when if you

> didn't

> > > > know what to look for, you couldn't see a problem. Her face is a

> > > > little narrow at the temples, but the width behind her ears is

> fine

> > > > I think with hair, it is a non-issue. Maybe if we lived closer

> to

> > > > the CT office and our insurance was paying 100%, I would have

> > > > considered a second band. I don't know. As is, I have to drive

> 4.5

> > > > hours with 6 mo twins and spend the night in Dallas once a week.

> > > > That has been a big drain on me and our family.

> > > >

> > > > So, anyway, we did all our exit stuff at 6 weeks. I guess that

> is

> > > > it. The weird thing is that I don't know what to do with myself

> now.

> > > > She was born with a " funny " head. We had out first CT (to check

> for

> > > > fluid) at 8 weeks. By 2.5 mo, we'd been referred to a

> specialist to

> > > > discuss craniosynostosis. After 2 months of thinking she had

> > > > craniosynostosis, finding a surgeon, finding ANOTHER surgeon,

> CTs,

> > > > road-trips to Oklahoma City then Dallas we are told we just

> need a

> > > > helmet and are referred to CT. You all know the rest of the

> story--

> > > > complete with weekly adjustments requiring 5 hour one-way drive

> and

> > > > hotel stay. This headshape thing has been such a part of our

> lives

> > > > for my daughter's WHOLE LIFE! Who knows, maybe the silver

> lining is

> > > > that I didn't have the time/luxury to freak out about having

> twins

> > > > and a 2 yr old. I was too busy just dealing with all of this.

> > > >

> > > > As time passed, I probably won't check in as much, though I am

> sure

> > > > I'll lurk here and htere. If anyone has a child with scaphy,

> who is

> > > > banded at a young age, is from Oklahoma, or WHATEVER plaese

> email me!

> > > >

> > > > I've posted some " after 6 weeks " pictures in Blythe's file on

> the

> > > > plagio kids section . CT is sending me my exit photos and I'll

> do a

> > > > proper before and after when those come.

> > > >

> > > > Thank you all for eveything!!!

> > > >

> > > > Tulsa, Oklahoma

> > > > Hardin (Hardy) 2.5 yrs

> > > > Charlotte Maeve and Blythe (my DOC GRADUATE @ 6

> wks!!) 6

> > > > mo.

[Guest guest]

That is great news! I'm so glad that the hard work of repositioning

paid off for ya'll.

Natasha

> > > ,

> > >

> > > Congrats! That gives me hope. Not that my Amethyst has the

same

> > kind

> > > of plagio. I have no idea how long hers will take to " fix " .

> > >

> > > We're going to see Dr. Hobar tomorrow am for the final

verdict. We

> > > went in a couple of months ago, and they wanted us to wait til

she

> > was

> > > about 5 mos old before making the final decision.

So.....tomorrow

> > is

> > > the big day. And we've got a big drive of about 5 hours ahead

of

> > us.

> > > Sounds like a very similar boat that we're about to be in.

> > Luckily,

> > > I've only got one baby to drive that trip with. And her daddy

is

> > > coming with me tomorrow. If Dr. Hobar and his colleagues say,

yep,

> > > band her...we're going to spend the night in Dallas and have

her

> > > casted in the morning. Did you stay at the Bradford by any

chance.

> > > Sounds like it will be a lovely place.

> > >

> > > Anyway, congrats on such a speedy treatment! It give me lots

of

> > hope!

> > >

> > > Jocelyn

> > > Mom to Amethyst

> > >

> > >

> > > > >I am blown away! Just seems like we got here and we are

done.

> > And I

> > > > > though scaphy was supposed to be a difficult correction.

HA!

> > > > >

> > > > > We banded Blythe at 4.5 months for scaphocephaly w/ facial

> > > > > asynmmetry in a SIDE-OPENING DOC band. At the time, we

thought

> > she

> > > > > would probably need 2 bands, the first (side-opening) to

> > correct the

> > > > > asymmetry (they can't do the " normal " scaphy band with

> > asymmetry)

> > > > > then a second band to give her some much needed width and

> > soften the

> > > > > sharp shelfing on the back of her head.

> > > > >

> > > > > By 3-4 weeks it was clear that she was getting a lot of

width

> > with

> > > > > the side opening band. By 4 weeks, out therapists and I

didn't

> > think

> > > > > she would need the second band. We went back to the

specialist

> > (Dr

> > > > > Hobar in Dallas) at 5 weeks, who thought she looked great.

If we

> > > > > wanted to, we could get a second band, but he was happy

with the

> > > > > result at this point.

> > > > >

> > > > > I'd say of 100% correction, we have 90%-95%. Doesn't seem

worth

> > it

> > > > > to do a second DOC Band for marginal correction when if

you

> > didn't

> > > > > know what to look for, you couldn't see a problem. Her

face is a

> > > > > little narrow at the temples, but the width behind her

ears is

> > fine

> > > > > I think with hair, it is a non-issue. Maybe if we lived

closer

> > to

> > > > > the CT office and our insurance was paying 100%, I would

have

> > > > > considered a second band. I don't know. As is, I have to

drive

> > 4.5

> > > > > hours with 6 mo twins and spend the night in Dallas once a

week.

> > > > > That has been a big drain on me and our family.

> > > > >

> > > > > So, anyway, we did all our exit stuff at 6 weeks. I guess

that

> > is

> > > > > it. The weird thing is that I don't know what to do with

myself

> > now.

> > > > > She was born with a " funny " head. We had out first CT (to

check

> > for

> > > > > fluid) at 8 weeks. By 2.5 mo, we'd been referred to a

> > specialist to

> > > > > discuss craniosynostosis. After 2 months of thinking she

had

> > > > > craniosynostosis, finding a surgeon, finding ANOTHER

surgeon,

> > CTs,

> > > > > road-trips to Oklahoma City then Dallas we are told we

just

> > need a

> > > > > helmet and are referred to CT. You all know the rest of

the

> > story--

> > > > > complete with weekly adjustments requiring 5 hour one-way

drive

> > and

> > > > > hotel stay. This headshape thing has been such a part of

our

> > lives

> > > > > for my daughter's WHOLE LIFE! Who knows, maybe the silver

> > lining is

> > > > > that I didn't have the time/luxury to freak out about

having

> > twins

> > > > > and a 2 yr old. I was too busy just dealing with all of

this.

> > > > >

> > > > > As time passed, I probably won't check in as much, though

I am

> > sure

> > > > > I'll lurk here and htere. If anyone has a child with

scaphy,

> > who is

> > > > > banded at a young age, is from Oklahoma, or WHATEVER

plaese

> > email me!

> > > > >

> > > > > I've posted some " after 6 weeks " pictures in Blythe's file

on

> > the

> > > > > plagio kids section . CT is sending me my exit photos and

I'll

> > do a

> > > > > proper before and after when those come.

> > > > >

> > > > > Thank you all for eveything!!!

> > > > >

> > > > > Tulsa, Oklahoma

> > > > > Hardin (Hardy) 2.5 yrs

> > > > > Charlotte Maeve and Blythe (my DOC GRADUATE @ 6

> > wks!!) 6

> > > > > mo.