CRISTA

[Guest guest]

Hi Amber,

We leave for SLC on Jan 20th. They want to do an MRI on the 21st and cast on the 22nd. He will stay overnight in the hospital and we will stay for another day in case of any problems and come home on Sat. I am in trouble though because I don't have a Dr. here, I think I have burned too many bridges. LOL!

What is Zane's curve at again? I know his RVAD is 50 like .

Crista

[Guest guest]

Hi Amber,

That is so good that Zane has stayed at 33 degrees. I look at and I would bet he is somewhere around 70 degrees now. It is so sad!! He was 50 2 months ago and it is so OBVIOUS to me he has gotten much worse.

and no, my inlaws are watching for us. I guess they will do that every 9 weeks when we go to SLC. I think it would be hard to bring him, he would be all over the place.

I have a great feeling about Zane, I think he is going to be just fine.

Crista

[Guest guest]

Thanks Amber,

I hope that our baby is going to be okay. I feel so sad these days about him because I am so...scared about what his curve really is these days. I haven't heard of any baby so young so severe. It makes me sick to think that 3 years ago he would have progressed even further because Dr.'s wouldn't cast then. The sad sad thing is I hear a raspiness in his lungs when he breathes, and he is losing weight because he throws up all the time now. I often wonder if his spine is compressing his tummy..and just think 2 months ago with a curve of 50 and an rva of 50 they just wanted to wait!!!!!!!!!!!!!

I think we will take a picture tomorrow of his back and post it for everyone to see.

Say prayers for him!

Crista

[Guest guest]

Hey girlie!

That means so much to me for you to say that about Zane. I am

thankful it hasn't progressed very much, yet the rva is 50. go

figure. but i don't want to question it.. lol..

i just feel really bad that nicholas has progressed.. but you know

it's going to be okay because he's soo young and your casting him

very soon and you've done everything you need to do!

-Amber-

[Guest guest]

Crista,

My prayers are with little Nate and your family everyday.

Hang in there hon...you are doing everything you can.

I'll try and phone you today... Olivia will be going to my Moms, so I will be free for a little bit.

talk soon,

[Guest guest]

Hey Amber,

What about the front?? Does he stick out like that on one side? Aren't you goung to Shriners today??

[Guest guest]

Amber,

Good luck with your surgery!! I had to also have surgery after to get "stuff" fixed from childbirth. I was miserable for 4 months but I am like brand new or at least like a 21 year old. Good Luck with your legal suff too Amber. Remember that you are not alone, you can pick up the phone and call collect if you need someone to talk too!

Crista

[Guest guest]

Crista,

You are right on the money

I also want to remind everyone that this (probably) has not been done on a child this little in the U.S. Usually a cast is applied to children with really high degrees, who are quite a bit bigger than little .

We will get it right next time.

heather

[Guest guest]

Thanks

talk to you soon

heather

[Guest guest]

Crista,

Thanks for letting me know..

heath

[Guest guest]

Crista,

LaLonde was his name...

Do you know of his interest level, or is he doing this already?

heath

[Guest guest]

,

He is with Newton and Wenger. They were the one's in San Diego that were going to cast at first. So....They are very open to it.

Dr. D'Astous has a good relationship with Dr. Lalonde so that is good.

Crista

[Guest guest]

Right on Crista,

I'll add them to the list!

thank you,

[Guest guest]

Hi,

I noticed on the group yesterday that little Nick's symptoms arent clearing, yet.

Oh Crista, Im so sorry that you have to wait..Im sure frustration doesnt even describe what you are feeling, right now.

Im sure our great doctor will get him in a.s.a.p., because he too understands the time sensitivity of this.

I'll call you later,

sincerely,

Heath

[Guest guest]

Hi ,

All of the Dr.'s have said that it isn't a fused rib afterall. Not really sure what it is though. I was told it was basically a cosmetic issue.

Crista

[Guest guest]

Crista,

No date set yet ! Not even a clinic date. I imagine he will want to

see us before he goes on vacation, in July sometime. If the cast

still fits, he probably won't change it until September. I'm

accustomed to the long wait - I'm a hardened veteran, ya know. I

also think he doesn't want to expose her to many x-rays. He knows

this worries me. So, she will definately have one more cast change,

but there will be a stand-up x-ray without the cast before the next

one is applied.

I know this IS a long time, but her back was pretty messed up ! I

envy Tyler who is now FREE of any splintage. I wish I could say the

same, but you know, I wouldn't switch places with some of the moms

who are going through surgery with their children for anything in the

world ! I would gladly have my daughter in a cast until the age of

14 if it meant that she could avoid surgery and lead a normal

painfree life. People have these misconceptions about casts. These

casts are called " body casts " , a more appropriate name should

be " plaster corsets " . Maybe that would sell people on the idea ?

I'm rambling now. Did I answer your question ? Oh yeah, I did.

Celia

>

>

> Celia,

> We get our new cast on June 9th, and I am very excited to see what

kind of

> correction we get with the new cast. What about Deirdra? Did she

have her

> cast change yet, and if not when is that going to happen? I

actually can't wait

> till June 8th to give him a BATH!!! LOL

>

> Crista

[Guest guest]

Celia,

I know youve tried to explain it before, but I was wondering why

Deidre is in her casts for so long? Why dont they push her curve back

quicker by applying the cast more frequently, like and

? Just curious. I would think that she could be out sooner if

the casts were a little more aggressive. Seems to be working out so

well for and the rest. Just a thought. I agree about the x-ray

thing. It worries me that Nate will have to have them at LEAST every

six months for possibly the rest of his life. The ortho mentioned

that he may go to every year if he can have enough that show no

change or a zero curve in succession. I think that its a greater risk

for him NOT to have them though. I fear that I may say " okay " to no x-

ray and it will be the time he actually DOES progress and then six

months later he needs surgery. I know theres little chance of that

happening, but there was also little chance of him getting scoli in

the first place! (Now IM rambling!!) LOL Talk soon!

~

[Guest guest]

Crista,

I really think you need to " chill " out. There was no sarcasm in my

remarks. I think patient/doctor loyalty is important. There is also

nothing wrong with the study being conducted by Dr. D'Astous. I

think it's great !!! Didn't I say that ?

Celia

>

>

> Celia,

> Why the sarcasm? I don't get it.

> Dr. D'Astous and I have already discussed this issue. Patient

loyalty has

> nothing to do with it, it's called being practical. If I have a

problem then I

> go back if not I stay here and see a Dr. that is capable of

ordering an x-ray.

> Actually, Dr. D'Astous friend who is also a French Canadian is in

San Diego

> and we have a great Raport with that office. This is who I will

see and he

> will also be in touch with Dr. D'Astous if need be. This is not

about me, or my

> Dr. liking me. This is about my son and moving on with our lives

when all is

> said and done. Also, helping parents that are going through this

once

> is cured.

>

> Oh....and one more thing. Dr. D'Astous has alot of children that

need his

> time, children with BIG issues. He doesn't need me to be coming up

to pay a

> visit when it is not necessary. I doubt Shriners would even

approve such a

> ridiculous thing!

>

> Crista

[Guest guest]

hi crista,

good to hear patrick is doing so good, and really glad to

hear about the head growth!!! kathryn is doing great, we have another

adjustment on the 21st. at our last adjustment our therapist told us

we have maybe 6 more weeks then we will be done....yipeeee!!! she has

been holding up pretty good in the heat. we keep it nice and cool in

the house and she basically wears a t-shirt and a diaper in the

house...i am dreading the electric bill ugh!! but it is well worth

it. we take her band off everytime we do PT and we have found she

just loves it when we rub her head with a towel! i don't think we

will be spending a whole lot of time outside till the band comes off,

it has already gotten to 95 degrees here...oh well i burn easy

anyways..lol

kelly(mom to kathryn,plagio/brachy/tort,banded 5/03 texas)

> Hi,

>

> Isn't the headsicle crazy lookin? I thought it was really cool

> though. LOL. I can't even imagine somebody carrying that in the

mall

> comparing it to kids heads. Scary, but funny.

> Speaking of headsicle...I can't wait to compare it to his head this

> week. I know he has grown in the last day or so cause the band is a

> noticeably tighter on his forehead. I'm sure there will be

> adjustments elsewhere too. I don't see anymore rounding really in

the

> back this week, but I swear his conehead isn't nearly as prominent.

I

> think thats even better then rounding! Yay! We'll see what his

ortho

> says though.

> We haven't had any major problems since the heat started. I wipe

his

> band down twice a day so it keeps the stink smell away for the most

> part. His helmet is really open so I don't think he's really

> uncomfortable in it. We keep the a/c at around 70 all the time for

> added comfort. I don't know how some kids adjust to the helmets

that

> cover up most of the head. Poor little tykes. I guess PJ's lucky in

> that sense. We also don't get extreme heat here(like in TX) in IL,

> but we sure get humidity most of the summer. Ick.

> I can't believe we are going on a month with his band. These four

> weeks have flown by so quickly.

> How's holding up this summer?

>

> Crista

> Mom to -8 mo old-DOC 5/13

[Guest guest]

hi Crista-

I was reading your post and saw your son is almost the same age

as my son . was born 10/1/03. He is also very Brachy. How is

everything going with your band? Do you see any change? I have with my

Starband except it seems that the left side of the back of the head is

growing faster to round out than the right side. was Plagio.

first to the right side, and then became more Brachy because I kept

turning his head to lay on the left side. By doing that, the back of

his head got really flat!. It seems like it is reversing now- going

back to Plagio. I hope his right back side will round out. Are you

having any of these problems? The Orthotist has to fit that back left

side every time we go in. It is really making a red spot area that I

have to watch ALL the time.

You son is adorable! He is fair like my son. Not much hair either! LOL

Krissy

ph's mom

Starband 5/28/04 (7 mos)

Palm Harbor, FL

On Jun 15, 2004, at 9:32 AM, bobobear4u2000 wrote:

>

> It is hard to keep up with everybody here. I find myself having to

> go back in the photo section every other minute to remind myself who

> is who. After awhile you get to know the regulars though.

> is a brachy too. We diagnosed him around 12 weeks and started

> aggressive repositioning until we finally ended up banding him four

> weeks ago. You can see his photos under plagio kids D.

> folder. He was born on Oct 3rd.

>

>

> Crista

> Mom to -8 mo old-DOC 5/13

>

>

> -- In Plagiocephaly , " sueandcolin2004 " <sflavin@c...>

> wrote:

>> Thank you Crista,

>>

>> Colin was born on 9/24/03 (edd was 9/23 so he was pretty prompt).

>> He is a very easy-going baby so I hope that continues!

>> Do you have pics of here? I am still fairly new but soon I

>> will learn about everyone's situation and remember their dc's cute

>> face!

>>

>> Sue

>>

>>

>>>> Hello everyone!

>>>>

>>>> I have been responding to your posts but since my email was

>>> bouncing

>>>> they did not show up. Please know that I care about all of you!

>>>>

>>>> Today at 2 pm EST is Colin's apptm't with the Orthotist. They

>> will

>>>> use the Starscanner and we will order the band today. I am no

>>> longer

>>>> as nervous and am really looking forward to moving along and

>>> getting

>>>> treatment underway. Is there anything I should bring to this

>>> apptm't

>>>> other than the usual comfort items (paci, bottle, toy)? He is

>> 8.5

>>>> mos. old.

>>>>

>>>> Krissy: what pamplhlet do you give out? I do not want one that

>> is

>>>> specific to a mfr. of bands so that I don't look like I'm

>>> marketing!

>>>> Thanks

>>>>

>>>> : I don't blame you for what you did; I would feel

>> compelled

>>>> too. Did the dh beat you up?

>>>>

>>>> Thank you everyone!

>>>> Sue

>>>> Colin F. (brachy) 8.5 mos.

>>>> Buffalo, NY

>

>

>

>

> For more plagio info

[Guest guest]

Hi Krissy,

Sounds like you were coming out of the hospital just as I was checkin

in! I checked in that Friday morning and left Sunday night.

I call brachy because that's mostly what he is. One of his

sides is a little plagio, but only us members with our trained eyes

for plagio would be able to detect it The band maker carved out a

tiny portion in the back of his foam for the difference.

We've had a very uneventful four weeks in his band. I'm really sick

of his whole weird headshape. I just want this thing over with

already!!!!!!!

I took him out on a stroller ride this evening bandless. I thought it

would be nice to air out his poor head before bed. It seems I'm quite

obsessed with staring at his head when the helmet is off. I swear I

drive myself crazy. Is it better? Is it rounder? I don't know.

Yes, I would say overall he's had some nice correction for being in

it only a month, but he still has the peak on top that seems to be

taking forever to soften. That's the whole reason we banded him.

Hoping to correct his conehead. I'm expecting alot and we have a ways

to go. Haven't noticed anything getting worse though so that's always

a plus. The only thing I have seen is that his better side seems to

look better and his plagio side looks still about the same. Err!

You can absolutely see changes in . These helmets are incredible.

Are next fitting is Thursday.

Crista

Mom to -8 mo old- DOC 5/13

> >>>> Hello everyone!

> >>>>

> >>>> I have been responding to your posts but since my email was

> >>> bouncing

> >>>> they did not show up. Please know that I care about all of you!

> >>>>

> >>>> Today at 2 pm EST is Colin's apptm't with the Orthotist. They

> >> will

> >>>> use the Starscanner and we will order the band today. I am no

> >>> longer

> >>>> as nervous and am really looking forward to moving along and

> >>> getting

> >>>> treatment underway. Is there anything I should bring to this

> >>> apptm't

> >>>> other than the usual comfort items (paci, bottle, toy)? He is

> >> 8.5

> >>>> mos. old.

> >>>>

> >>>> Krissy: what pamplhlet do you give out? I do not want one that

> >> is

> >>>> specific to a mfr. of bands so that I don't look like I'm

> >>> marketing!

> >>>> Thanks

> >>>>

> >>>> : I don't blame you for what you did; I would feel

> >> compelled

> >>>> too. Did the dh beat you up?

> >>>>

> >>>> Thank you everyone!

> >>>> Sue

> >>>> Colin F. (brachy) 8.5 mos.

> >>>> Buffalo, NY

> >

> >

> >

> >

> > For more plagio info

[Guest guest]

Hey Crista

I am sorry to hear about your experience

I will call you this week to get the details

We are up the 28th thru the 4th of April ...we are getting casted on the 31st

Does that mean we will see you guys?????

cristab@... wrote:

Hi ,Sorry I didn't get a chance to say goodbye, I was pretty upset and just wanted to get out of the hospital. Well...they cut 's cast off, as you know, and then decided that he was too sick to be put under. I begged for a cast next week and they said NO!!!! So, now we go back on Easter Sunday, just where I want to be on Easter I might add. is without a cast and a brace for 1 month which really makes me nervous but it is out of my control so whatever happens will happen. I am so happy that I got to meet you and your family. Your boys are really sweet!I think that there are others going the week of Easter also. , Tawney, ??This time I am bringing my older son so that he will realize that he

would rather stay at home with Grandma and Grandpa. I think he thinks we go on vacation without him every couple of months.Anyways heather, glad your boys did so well. Love,Crista __________________________________________________

[Guest guest]

Crista! I didn't know that you had another baby! Sorry if I missed

your post about it. Congratulations!

Natasha

> > Hi all -

> >

> > I know I am still new to the group. I apologize then if this

> territory

> > has been covered.

> >

> > A few days ago I signed the petition to be sent to the pediatrics

> > association.

> >

> > Are brochures being sent to OB practices as well? I undertand

their

> > primary concern is the health of the mother and delivering a

healthy

> > baby. But I read many times the sticker above the lightswitch in

the

> > OB exam rooms and my hospital room that said, " Back to sleep,

tummy

> to

> > play " and never knew what it meant.

> >

> > Could placing brochures in the waiting rooms help? Afterall,

they

> have

> > information for La Leche League, etc. and that's certainly for

> > post-delivery use.

> >

> > I think in addition to tummy-to-play we should also say, keep

> pressure

> > off your baby's head because...

> >

> > Just by $.02 which buys about 1/150 gal. of gas.

[Guest guest]

Crista! I didn't know that you had another baby! Sorry if I missed

your post about it. Congratulations!

Natasha

> > Hi all -

> >

> > I know I am still new to the group. I apologize then if this

> territory

> > has been covered.

> >

> > A few days ago I signed the petition to be sent to the pediatrics

> > association.

> >

> > Are brochures being sent to OB practices as well? I undertand

their

> > primary concern is the health of the mother and delivering a

healthy

> > baby. But I read many times the sticker above the lightswitch in

the

> > OB exam rooms and my hospital room that said, " Back to sleep,

tummy

> to

> > play " and never knew what it meant.

> >

> > Could placing brochures in the waiting rooms help? Afterall,

they

> have

> > information for La Leche League, etc. and that's certainly for

> > post-delivery use.

> >

> > I think in addition to tummy-to-play we should also say, keep

> pressure

> > off your baby's head because...

> >

> > Just by $.02 which buys about 1/150 gal. of gas.