Re: Cole/Erie

[Guest guest]

It sounds like things went well and that you have a week to look forward to in August w/o the cast. How is he adjusting with the cast back on? Good luck with this cast- hope it works out well for him and isn't too heavy. and Evanmichelle_r_baird <michelle_r_baird@...> wrote: Hello Everyone,Well Cole is back in his 3rd cast. Not sure what to think of thiscast. We decided not to go with waterproof until next time. Dr. Kishansaid we should wait until it is a little warmer, so Cole can air drywithout freezing. He decided to go with fiberglass and a small layerof plaster. He added two thick padding layers of felt . I guess sinceCole had skin issues with the last one, so this cast is a bit heavierthan the last. I asked him what material was used in the

newwaterproof casts that are being used. I can't remember what he called it, but as you all have been talking about, it is not gortex. Iasked him about gortex, and he said it has not yet been used in scolicasts, YET. They do have gortex there (he showed it to me) and I thinkhe said he would be willing to try it on Cole in May. As far as Cole's progress. I guess I'm happy. We went from 15 degreesto 13 degrees cobb, and low 20's for RVAD. I guess I was a littlehopeful that we would get into single digits for cobb. Dr. Kishan saidwe are really concentrating on the rotation right now, and to notworry too much about the cobb for this cast. He said Cole is rigid, sohe gets less correction at a time, but the correction he gets holdsreally well. They did not do a before cast xray. He said they aresteering away from that because these kids are getting too muchradiation too often. Cole did GREAT coming out of the

anesthesia. Iwas so proud of him. Of course pedaling is always the worst part for us. Again,the staff at Shriner's was amazing. We are due back May 23/24. Ican't believe the 4th cast is in the makings. WOW! We are also goingto take the cast off in Aug for a week for a beach trip. Can't wait., it was nice to meet you, Adison, and your mom. What a trooperand cutie he is. Take care.Time for bed. and Cole (Current cobb 13, RVAD around 23?)

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Thanks and for the encouraging words. I am greatful for the opportunity we have to do this kind casting. Sometimes I get a little anxious and wish things would happen quick. , I hope Lily will be able to avoid the body cast. I'll definitely keep her in our prayers. When do you go to SLC next? and Colemichelle_r_baird <michelle_r_baird@...> wrote: Hello Everyone, Well Cole is back in his 3rd cast. Not sure what to think of this cast. We decided not to go with waterproof until next time. Dr. Kishan said we should wait until it is a little warmer, so Cole can air dry without freezing. He decided to go with fiberglass and a small layer of plaster. He added two thick padding layers of felt . I guess since Cole had skin issues with the

last one, so this cast is a bit heavier than the last. I asked him what material was used in the new waterproof casts that are being used. I can't remember what he called it, but as you all have been talking about, it is not gortex. I asked him about gortex, and he said it has not yet been used in scoli casts, YET. They do have gortex there (he showed it to me) and I think he said he would be willing to try it on Cole in May. As far as Cole's progress. I guess I'm happy. We went from 15 degrees to 13 degrees cobb, and low 20's for RVAD. I guess I was a little hopeful that we would get into single digits for cobb. Dr. Kishan said we are really concentrating on the rotation right now, and to not worry too much about the cobb for this cast. He said Cole is rigid, so he gets less correction at a time, but the correction he gets holds really well. They did not do a before cast xray. He said they are steering

away from that because these kids are getting too much radiation too often. Cole did GREAT coming out of the anesthesia. I was so proud of him. Of course pedaling is always the worst part for us. Again,the staff at Shriner's was amazing. We are due back May 23/24. I can't believe the 4th cast is in the makings. WOW! We are also going to take the cast off in Aug for a week for a beach trip. Can't wait. , it was nice to meet you, Adison, and your mom. What a trooper and cutie he is. Take care. Time for bed. and Cole (Current cobb 13, RVAD around 23?)

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Hi ,

Yeah, they haven't done gortex & fiberglass there YET in Erie but

they have been @ here Ortho's office here for a long time & it works

great.. the combination. I'm going to request it be used while we're

there. You'll see the combination of the 2 are perfect for the

intended purposed when you get his next one on, but that of course

if just my opinion

, the progress sounds GREAT! Just keep in mind the intention

of their casting method there you know, the overall picture that

includes the rotation, I'm sure you'll see more cobb improvment once

the rotation is decreasing, and 20 RVAD is great, Sol's @ 45 last

time she measured. It so great even seeing that aspect addressed

here to me b/c it's not something that was being done @ her ortho's

office here & I'm so thankful there is a more complete way that's

being used to correct these children.. and just pray that's the case

for us all! But so glad to hear how well things went, I can't wait

to meet the staff there, they all seem so great over the phone too.

Take care

-joy

>

> Hello Everyone,

> Well Cole is back in his 3rd cast. Not sure what to think of this

> cast. We decided not to go with waterproof until next time. Dr.

Kishan

> said we should wait until it is a little warmer, so Cole can air

dry

> without freezing. He decided to go with fiberglass and a small

layer

> of plaster. He added two thick padding layers of felt . I guess

since

> Cole had skin issues with the last one, so this cast is a bit

heavier

> than the last. I asked him what material was used in the new

> waterproof casts that are being used. I can't remember what he

> called it, but as you all have been talking about, it is not

gortex. I

> asked him about gortex, and he said it has not yet been used in

scoli

> casts, YET. They do have gortex there (he showed it to me) and I

think

> he said he would be willing to try it on Cole in May.

>

> As far as Cole's progress. I guess I'm happy. We went from 15

degrees

> to 13 degrees cobb, and low 20's for RVAD. I guess I was a little

> hopeful that we would get into single digits for cobb. Dr. Kishan

said

> we are really concentrating on the rotation right now, and to not

> worry too much about the cobb for this cast. He said Cole is

rigid, so

> he gets less correction at a time, but the correction he gets holds

> really well. They did not do a before cast xray. He said they are

> steering away from that because these kids are getting too much

> radiation too often. Cole did GREAT coming out of the anesthesia. I

> was so proud of him. Of course pedaling is always the worst part

for us.

>

> Again,the staff at Shriner's was amazing. We are due back May

23/24. I

> can't believe the 4th cast is in the makings. WOW! We are also

going

> to take the cast off in Aug for a week for a beach trip. Can't

wait.

>

> , it was nice to meet you, Adison, and your mom. What a trooper

> and cutie he is. Take care.

>

> Time for bed.

> and Cole (Current cobb 13, RVAD around 23?)

>

[Guest guest]

Actually, fiberglass has been used, just not gortex. Cole's last cast was only fiberglass with some thin padding. It was an awesome cast (10 ounces!) and very thin. You could not even tell Cole had it on under his clothes. This cast is fibercast with a thin layer of plaster, and two very thick felt paddings. Not sure why he didn't go straight fiberglass this time, but the extra adding was for Cole's skin. A little more bulky. O-well. Cole is adjusting well this time. That would be great if they will do the fiberglass/gortex combo. I am hoping for that for Cole at the end of May as well. Tell them how much you like it, and maybe they'll be open to it. They have the gortex there.I'm surprised your ortho does not discuss/ tx RVAD.. Cole's shriner doc said it is impairitive to get the RVAD less than 20 degress. Preferably 0. He said the casting will do no good in the long run if the RVAD is not resolved. The twist, in the long run, will cause the scoli to come

back even if the cobb gets to zero. At least that's what I understood. So I am so happy that Solana is going to Shriners. I'll be anxious to see the differnce in results from Shriners vs. your current doc. You'll LOVE Shriners.Thanks for all the info. on gortex. Maybe it will be a common casting technique soon. and Colemosunshinebaby <mosunshinebaby@...> wrote: Hi , Yeah, they haven't done gortex & fiberglass there YET in Erie but they have been @ here Ortho's office here for a long time & it works great.. the combination. I'm going to request it be used while we're there. You'll see the combination of the 2 are perfect for the intended purposed when you get his next one on, but that of course if just my opinion , the progress sounds GREAT!

Just keep in mind the intention of their casting method there you know, the overall picture that includes the rotation, I'm sure you'll see more cobb improvment once the rotation is decreasing, and 20 RVAD is great, Sol's @ 45 last time she measured. It so great even seeing that aspect addressed here to me b/c it's not something that was being done @ her ortho's office here & I'm so thankful there is a more complete way that's being used to correct these children.. and just pray that's the case for us all! But so glad to hear how well things went, I can't wait to meet the staff there, they all seem so great over the phone too. Take care -joy > > Hello Everyone, > Well Cole is back in his 3rd cast. Not sure what to think of this > cast. We decided not to go with waterproof

until next time. Dr. Kishan > said we should wait until it is a little warmer, so Cole can air dry > without freezing. He decided to go with fiberglass and a small layer > of plaster. He added two thick padding layers of felt . I guess since > Cole had skin issues with the last one, so this cast is a bit heavier > than the last. I asked him what material was used in the new > waterproof casts that are being used. I can't remember what he > called it, but as you all have been talking about, it is not gortex. I > asked him about gortex, and he said it has not yet been used in scoli > casts, YET. They do have gortex there (he showed it to me) and I think > he said he would be willing to try it on Cole in May. > > As far as Cole's progress. I guess I'm happy. We went from 15 degrees > to 13 degrees cobb, and low 20's for RVAD. I guess I

was a little > hopeful that we would get into single digits for cobb. Dr. Kishan said > we are really concentrating on the rotation right now, and to not > worry too much about the cobb for this cast. He said Cole is rigid, so > he gets less correction at a time, but the correction he gets holds > really well. They did not do a before cast xray. He said they are > steering away from that because these kids are getting too much > radiation too often. Cole did GREAT coming out of the anesthesia. I > was so proud of him. Of course pedaling is always the worst part for us. > > Again,the staff at Shriner's was amazing. We are due back May 23/24. I > can't believe the 4th cast is in the makings. WOW! We are also going > to take the cast off in Aug for a week for a beach trip. Can't wait. > > , it was nice to meet you, Adison, and your mom. What a

trooper > and cutie he is. Take care. > > Time for bed. > and Cole (Current cobb 13, RVAD around 23?) >

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Yeah, I'm definitely going to tell them & really push for the combo.

of the two for her, I know that it's so great b/c it's what she's in

now, can just picture it being only torso covering.. and her being

able to stand up straight, sit, etc..

And I know.. about our Dr. here saying getting RVAD down wasn't

their goal!! I specifically asked him, and he said no, not that

he's aware, yada yada. And he's very negative about her correcting,

like, chances are she's going to end up in surgery, etc.. that's the

majority of infant cases he's dealt with.. Well I WONDER WHY. They

really are just simply jerking the spine as straight as it can go

and " guiding " it straight and not even paying attn. to correcting

the rotation, crazy! And that's why they regress. That's why he's a

well reknown SURGEON you know.. definitely not concerned w/her

welfare & doing the absolute most possible to get her corrected..

sad. And I just can't even find words to explain how highly I feel

& regard Dr.'s like all the Dr.'s at Shriner's who are putting so

much time & dedication into the genuine concern of the welfare of

all of our kids, it's so moving to me. And the fact that they're so

open to incorporate other Dr.'s idea/opinions, like Mehtas, and

parents ideas and opinions like with the material, etc. I swear man,

whether she's corrected or not, I feel like the Dr.'s there &

Shriner's deserve some kind of insanely special recognition from all

of us parents, lol.. like a plaque or something =)

Anyway, THANK YOU for all the info. & everyone else here, I can't

wait to get in there either & am so great for this group to be able

to share experiences & learn from eachother & we'd be stuck here

persuing the absoulte wrong treatment & horrible cast if it weren't

for it.. Anyway, you guys take care too, i'm glad Cole's doing good

& adjusted well!!

-Joy

> >

> > Hello Everyone,

> > Well Cole is back in his 3rd cast. Not sure what to think of

this

> > cast. We decided not to go with waterproof until next time. Dr.

> Kishan

> > said we should wait until it is a little warmer, so Cole can

air

> dry

> > without freezing. He decided to go with fiberglass and a small

> layer

> > of plaster. He added two thick padding layers of felt . I guess

> since

> > Cole had skin issues with the last one, so this cast is a bit

> heavier

> > than the last. I asked him what material was used in the new

> > waterproof casts that are being used. I can't remember what he

> > called it, but as you all have been talking about, it is not

> gortex. I

> > asked him about gortex, and he said it has not yet been used in

> scoli

> > casts, YET. They do have gortex there (he showed it to me) and

I

> think

> > he said he would be willing to try it on Cole in May.

> >

> > As far as Cole's progress. I guess I'm happy. We went from 15

> degrees

> > to 13 degrees cobb, and low 20's for RVAD. I guess I was a

little

> > hopeful that we would get into single digits for cobb. Dr.

Kishan

> said

> > we are really concentrating on the rotation right now, and to

not

> > worry too much about the cobb for this cast. He said Cole is

> rigid, so

> > he gets less correction at a time, but the correction he gets

holds

> > really well. They did not do a before cast xray. He said they

are

> > steering away from that because these kids are getting too much

> > radiation too often. Cole did GREAT coming out of the

anesthesia. I

> > was so proud of him. Of course pedaling is always the worst

part

> for us.

> >

> > Again,the staff at Shriner's was amazing. We are due back May

> 23/24. I

> > can't believe the 4th cast is in the makings. WOW! We are also

> going

> > to take the cast off in Aug for a week for a beach trip. Can't

> wait.

> >

> > , it was nice to meet you, Adison, and your mom. What a

trooper

> > and cutie he is. Take care.

> >

> > Time for bed.

> > and Cole (Current cobb 13, RVAD around 23?)

> >

>

>

>

>

>

>

>

[Guest guest]

Congrats on cast # 3!!! Sounds like he's doing fantastic, :-) Best wishes, mom to and Jakemichelle_r_baird <michelle_r_baird@...> wrote: Hello Everyone,Well Cole is back in his 3rd cast. Not sure what to think of thiscast. We decided not to go with waterproof until next time. Dr. Kishansaid we should wait until it is a little warmer, so Cole can air drywithout freezing. He decided to go with fiberglass and a small layerof plaster. He added two thick padding layers of felt . I guess sinceCole had skin issues with the last one, so this cast is a bit heavierthan the last. I asked him what material was used in the newwaterproof casts that are being used. I can't remember what he called it, but as you all have been talking

about, it is not gortex. Iasked him about gortex, and he said it has not yet been used in scolicasts, YET. They do have gortex there (he showed it to me) and I thinkhe said he would be willing to try it on Cole in May. As far as Cole's progress. I guess I'm happy. We went from 15 degreesto 13 degrees cobb, and low 20's for RVAD. I guess I was a littlehopeful that we would get into single digits for cobb. Dr. Kishan saidwe are really concentrating on the rotation right now, and to notworry too much about the cobb for this cast. He said Cole is rigid, sohe gets less correction at a time, but the correction he gets holdsreally well. They did not do a before cast xray. He said they aresteering away from that because these kids are getting too muchradiation too often. Cole did GREAT coming out of the anesthesia. Iwas so proud of him. Of course pedaling is always the worst part for us. Again,the staff at Shriner's was

amazing. We are due back May 23/24. Ican't believe the 4th cast is in the makings. WOW! We are also goingto take the cast off in Aug for a week for a beach trip. Can't wait., it was nice to meet you, Adison, and your mom. What a trooperand cutie he is. Take care.Time for bed. and Cole (Current cobb 13, RVAD around 23?)

[Guest guest]

Hi ,

I know you are disappointed about not getting into the single digits in cast, but you may remember that Ian was at 6 or 7 degrees in his first cast and that both he and Cole ended up being around 26 degrees out of cast. So, even though Ian's in cast numbers may be smaller (and remember his curve is VERY flexible), it sounds like they are getting similar results as far as out of cast measurements and that is where it really counts.

Dr. K mentioned that they had been talking about skipping x-rays and I told him I wanted one anyway. He was fine with it because he said that the way they shoot x-rays now it is like being exposed to ambient sun exposure for 14 days. He said cat-scans were a lot worse (I think it was cat scans anyway) because it was like a 1000 days of ambient exposure. So, I am not sure if we'll end up getting a film in May or not. I would think they would want to do a film because of the cast being fiberglass this time.....we'll see.

Glad to hear he did well coming out of the anesthesia. That is still so hard for us! I hope he adjusts well to his new cast.

Looks like we will miss you in May. We'll be there on the 17th and 18th.

Noelle (12-2-01)Ian (8-15-04)

Cole/Erie

Hello Everyone,Well Cole is back in his 3rd cast. Not sure what to think of thiscast. We decided not to go with waterproof until next time. Dr. Kishansaid we should wait until it is a little warmer, so Cole can air drywithout freezing. He decided to go with fiberglass and a small layerof plaster. He added two thick padding layers of felt . I guess sinceCole had skin issues with the last one, so this cast is a bit heavierthan the last. I asked him what material was used in the newwaterproof casts that are being used. I can't remember what he called it, but as you all have been talking about, it is not gortex. Iasked him about gortex, and he said it has not yet been used in scolicasts, YET. They do have gortex there (he showed it to me) and I thinkhe said he would be willing to try it on Cole in May. As far as Cole's progress. I guess I'm happy. We went from 15 degreesto 13 degrees cobb, and low 20's for RVAD. I guess I was a littlehopeful that we would get into single digits for cobb. Dr. Kishan saidwe are really concentrating on the rotation right now, and to notworry too much about the cobb for this cast. He said Cole is rigid, sohe gets less correction at a time, but the correction he gets holdsreally well. They did not do a before cast xray. He said they aresteering away from that because these kids are getting too muchradiation too often. Cole did GREAT coming out of the anesthesia. Iwas so proud of him. Of course pedaling is always the worst part for us. Again,the staff at Shriner's was amazing. We are due back May 23/24. Ican't believe the 4th cast is in the makings. WOW! We are also goingto take the cast off in Aug for a week for a beach trip. Can't wait., it was nice to meet you, Adison, and your mom. What a trooperand cutie he is. Take care.Time for bed. and Cole (Current cobb 13, RVAD around 23?)

[Guest guest]

Joy,

I agree that it is AMAZING that the Shriners docs are so open to suggestions and willing to try different things. Most orthos have God complexes, but the Shriners docs are not like that at all. Dr. K has been AWESOME about answering my emails ASAP. I do take care not to abuse it, but it is so nice to be able to get answers when I need them.

Noelle (12-2-01)Ian (8-15-04)

Re: Cole/Erie

Yeah, I'm definitely going to tell them & really push for the combo. of the two for her, I know that it's so great b/c it's what she's in now, can just picture it being only torso covering.. and her being able to stand up straight, sit, etc..And I know.. about our Dr. here saying getting RVAD down wasn't their goal!! I specifically asked him, and he said no, not that he's aware, yada yada. And he's very negative about her correcting, like, chances are she's going to end up in surgery, etc.. that's the majority of infant cases he's dealt with.. Well I WONDER WHY. They really are just simply jerking the spine as straight as it can go and "guiding" it straight and not even paying attn. to correcting the rotation, crazy! And that's why they regress. That's why he's a well reknown SURGEON you know.. definitely not concerned w/her welfare & doing the absolute most possible to get her corrected.. sad. And I just can't even find words to explain how highly I feel & regard Dr.'s like all the Dr.'s at Shriner's who are putting so much time & dedication into the genuine concern of the welfare of all of our kids, it's so moving to me. And the fact that they're so open to incorporate other Dr.'s idea/opinions, like Mehtas, and parents ideas and opinions like with the material, etc. I swear man, whether she's corrected or not, I feel like the Dr.'s there & Shriner's deserve some kind of insanely special recognition from all of us parents, lol.. like a plaque or something =)Anyway, THANK YOU for all the info. & everyone else here, I can't wait to get in there either & am so great for this group to be able to share experiences & learn from eachother & we'd be stuck here persuing the absoulte wrong treatment & horrible cast if it weren't for it.. Anyway, you guys take care too, i'm glad Cole's doing good & adjusted well!!-Joy> >> > Hello Everyone,> > Well Cole is back in his 3rd cast. Not sure what to think of this> > cast. We decided not to go with waterproof until next time. Dr. > Kishan> > said we should wait until it is a little warmer, so Cole can air > dry> > without freezing. He decided to go with fiberglass and a small > layer> > of plaster. He added two thick padding layers of felt . I guess > since> > Cole had skin issues with the last one, so this cast is a bit > heavier> > than the last. I asked him what material was used in the new> > waterproof casts that are being used. I can't remember what he > > called it, but as you all have been talking about, it is not > gortex. I> > asked him about gortex, and he said it has not yet been used in > scoli> > casts, YET. They do have gortex there (he showed it to me) and I > think> > he said he would be willing to try it on Cole in May. > > > > As far as Cole's progress. I guess I'm happy. We went from 15 > degrees> > to 13 degrees cobb, and low 20's for RVAD. I guess I was a little> > hopeful that we would get into single digits for cobb. Dr. Kishan > said> > we are really concentrating on the rotation right now, and to not> > worry too much about the cobb for this cast. He said Cole is > rigid, so> > he gets less correction at a time, but the correction he gets holds> > really well. They did not do a before cast xray. He said they are> > steering away from that because these kids are getting too much> > radiation too often. Cole did GREAT coming out of the anesthesia. I> > was so proud of him. Of course pedaling is always the worst part > for us. > > > > Again,the staff at Shriner's was amazing. We are due back May > 23/24. I> > can't believe the 4th cast is in the makings. WOW! We are also > going> > to take the cast off in Aug for a week for a beach trip. Can't > wait.> > > > , it was nice to meet you, Adison, and your mom. What a trooper> > and cutie he is. Take care.> > > > Time for bed.> > and Cole (Current cobb 13, RVAD around 23?)> >> > > > > > >