Re: & Evan

[Guest guest]

Hi

Welcome to the CAST Support Group. Please read www.infantilescoliosis.org in its entirety, when you get a chance.

Its important to determine exactly what type of scoliosis Evan has, so the best plan of care can be put in place for him. If its determined that he does have infantile (not congenital)), early treatment is most effective.

Please look into the Files section of CAST for an article titled "Growth as a corrective force in the early treatment of progressive infantile scoliosis". This article will expain in depth, the benefits of early treatment with serial corrective plaster.

Definately, check out the torticollis links for more info. I believe there are some parents on this listserve who are experienced with torticollis, and may have more insight on this.

Did they take an x-ray of Evan? If so, I would give them a ring to confirm the degree of his scoliosis. Find out what his Cobb and RVAD measurements are, if possible.

Has an MRI been scheduled to determine if the scoliosis is structural, or not? An MRI should be scheduled to determine if spine has any structural abnormalities (congenital). Once this is determined, an appropriate plan of care can be developed.

Some infants/children with infantile scoliosis have the resolving type, and some do not. Its best to keep a close watch, because a curve can progress fast in rapidly growing baby.

There a lot of experienced parents on this group who have children with congenital and infantile, so you are in the right place for support. Welcome.

Sincerely,

HRH

New member

My son Evan is 16 weeks old and we had noticed a curve in his back-his first visit to a Ped. Orthopedic specialist was yesterday. They told us that he has infantile scoliosis-but didn't tell us the degree of the curve. Since he is so young, they said that they would monitor him closely and that they would do a re-eval in 3 mos (March 1st) and if it had gotten worse, they would consider a cast or brace but if it didn't get any worse, they would prob. just let it go. He also has torticollis and is having PT for that. I was just wondering if anyone was in my same situation- we could use someone else's stories or advice to help us out. My dd Gracie is 2 1/2 and we have been blessed to not have any medical problems w/her up to this point. Thanks in advance!

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Hi-Thanks for all the e-mails: Evan did have several x-rays done,but no MRI. I haven't heard from our ped's office w/the report from the Ortho.specialist. From what I read-infantile is usually resolved on it's own- unless it progresses then a cast or brace is the best option-which the specialist mentioned. I appreciate all the advice, I will keep a close eye on his curve and will read those articles again-however-reading truly seems to scare me - especially when the specialist suggested to wait. I pushed for months to get him into an ENT over noisy breathing that they labled as laryengalmylasia (sp?) and I KNEW that his breating since 4 weeks old wasn't "normal" - I suppose I will just have to wait these 3mos out to see what the next step is. Thanks so much- heather hyatt <heather@...> wrote: Hi Welcome to the CAST Support Group. Please read www.infantilescoliosis.org in its entirety, when you get a chance. Its important to determine exactly what type of scoliosis Evan has, so the best plan of care can be put in place for him. If its determined that he does have infantile (not congenital)), early treatment is most effective. Please look into the Files section of CAST for an article titled "Growth as a corrective force in the early treatment of progressive infantile scoliosis". This article will expain in depth, the benefits of early treatment with serial corrective plaster. Definately, check out the torticollis links for more info. I believe there are some parents on this listserve who are experienced with torticollis, and may have more insight on this. Did they take an x-ray of Evan? If so, I would give them a ring to confirm the degree of his scoliosis. Find out what his Cobb and RVAD measurements are, if possible. Has an MRI been scheduled to determine if the scoliosis is structural, or not? An MRI should be scheduled to determine if spine has any structural abnormalities (congenital). Once this is determined, an appropriate plan of care can be developed. Some infants/children with infantile scoliosis have the resolving type, and some do not. Its best to keep a close watch, because a curve can progress fast in rapidly growing baby.

There a lot of experienced parents on this group who have children with congenital and infantile, so you are in the right place for support. Welcome. Sincerely, HRH New member My son Evan is 16 weeks old and we had noticed a curve in his back-his first visit to a Ped. Orthopedic specialist was yesterday. They told us that he has infantile scoliosis-but didn't tell us the degree of the curve. Since he is so young, they said that they would monitor him closely and that they would do a re-eval in 3 mos (March 1st) and if it had gotten worse, they would consider a cast or brace but if it didn't get any worse, they would prob. just let it go. He also has torticollis and is having PT for that. I was just wondering if anyone was in my same situation- we could use someone else's stories or advice to help us out. My dd Gracie is 2 1/2 and we

have been blessed to not have any medical problems w/her up to this point. Thanks in advance!

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[Guest guest]

,

Great job getting the MRI scheduled so soon. A second opinion can never hurt.

Please read www.infantilescoliosis.org in its entirety, and continue to ask questions on this group. There are so many experienced parents here, that have been down the road that your getting ready to travel.

If your interested in learning more about the early treatment with serial corrective POP (Plaster of Paris) jackets/casts, you should definately get a copy of "A New Direction". This video will explain to you in depth what early treatment is, and will give you a better understanding of this treatment, so you can arm yourself with the proper questions when visiting the docs. May I also recommend that you go to the Files section of this group and download the article "Growth as corrective force in the early treatment of progressive infantile scoliosis".

Thanks for joining CAST! You are definately on the right track to getting the best plan of care established for your precious babe.

Sincerely,

HRH

**If your interested in the video, e-mail me privately with the address where you would like the video/info sent to.

Evan-2nd Opinion

I have called the first orto just now and found out the degree of the curve 3 weeks ago was 33- That scares me! He acted like it wasn't signifigant!I have also talked to my ped and have scheduled an MRI for Dec 30th at another hospital to rule anything else out.I am in the process of making an appointment for a 2nd opinion-I will keep you all posted. Thanks so much-I know you all don't know me at all, but you don't know how much your advice on this (since it is all so new to me) truly helps me out-

[Guest guest]

,

I live in VA too! But, I am not sure where Independence is located. I am in Richmond.

If you print out that article by Miss Mehta that mentioned, it describes the type of casting you need to ask about and you can show it to the doc and see if he has ever heard of it. It's not the old Risser type of casting, but a casting technique developed by Miss Mehta. A lot of doctors have never heard of this type of casting, so when you mention casting to them, they think you are talking about the Risser type of casts.

Good luck with your appointment and be sure to update after you see the doctor. I hope it goes well.

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

Evan-2nd Opinion

I have called the first orto just now and found out the degree of the curve 3 weeks ago was 33- That scares me! He acted like it wasn't signifigant!I have also talked to my ped and have scheduled an MRI for Dec 30th at another hospital to rule anything else out.I am in the process of making an appointment for a 2nd opinion-I will keep you all posted. Thanks so much-I know you all don't know me at all, but you don't know how much your advice on this (since it is all so new to me) truly helps me out-

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I will do that! We are in SW VA- I truly didn't mean to post my address, I was trying to send a personal e-mail to and replied to the wrong email-OOPS- I was hoping the email w/my address could somehow be deleted! Have your children needed casts? Where have you been locally for treatment if you don't mind me asking? Our 2nd opinion will be at Duke Thanks so much. Gracie 5/28/03 Evan 8/7/05 Claflin <noellesmommy@...> wrote: , I live in VA too! But, I am not sure where Independence is located. I am in Richmond. If you print out that article by Miss Mehta that mentioned, it describes the type of casting you need to ask about and you can show it to the doc and see if he has ever heard of it. It's not the old Risser type of casting, but a casting technique developed by Miss Mehta. A lot of doctors have never heard of this type of casting, so when you mention casting to them, they think you are talking about the Risser type of casts. Good luck with your appointment and be sure to update after you see the doctor. I hope it goes well. Noelle (12-2-01)Ian (8-15-04) Evan-2nd Opinion I have called the first orto just now and found out the degree of the curve 3 weeks ago was 33- That scares me! He acted like it wasn't signifigant!I have also talked to my ped and have scheduled an MRI for Dec 30th at another hospital to rule anything else out.I am in the process of making an appointment for a 2nd opinion-I will keep you all

posted. Thanks so much-I know you all don't know me at all, but you don't know how much your advice on this (since it is all so new to me) truly helps me out- Find Great Deals on Holiday Gifts at

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I think can delete it for you. Yes, Ian is in a cast. We have seen two orthos here in Richmond and I didn't like either of them at all. I found that neither of them knew much about infantile scoliosis and nothing about the Mehta casts. The one actually does the titanium rib implants now, so my guess is that he leans more towards surgery, but I would never go to him again. I will email you privately with more detail when I get a chance...I am heading out the door for a girls night out .

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

Evan-2nd Opinion

I have called the first orto just now and found out the degree of the curve 3 weeks ago was 33- That scares me! He acted like it wasn't signifigant!I have also talked to my ped and have scheduled an MRI for Dec 30th at another hospital to rule anything else out.I am in the process of making an appointment for a 2nd opinion-I will keep you all posted. Thanks so much-I know you all don't know me at all, but you don't know how much your advice on this (since it is all so new to me) truly helps me out-

Find Great Deals on Holiday Gifts at

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Hello , I'm sorry I responded to the entire group about the MRI last Thursday. I was in the room with her because mom could not be because she is pregnant and h woke up about 40 min into it - they gave her so much medication that at 9:30 pm she still could not walk! Loved the pic of you w/Evan - hope he is doing well - what do you think about this fiberglass waterproof cast? h's mother has taken on the KNOW -IT -ALL CONCERNED Role all of a sudden - it really repulses me - the other day she had the nerve to ask me if I had given h her vitamins - I said " OH - now your the prim & proper mommy" she said I am a good mommy - now that I am not sad (yeah no drugs now that she is pregnant) I told her in return well I'm a lousy mommy so feel free to take over at anytime LOL! h still looks at me like I'm her mom - I think if it was not for h I would completely faze this women out of my

life - I feel so phony when I talk to her or have to deal w/ her anymore. She tried telling me she was gonna work on Sunday nights and I said like hell you are and she had the nerve to ask WHY - I said you are already working Saturday's till 5 pm - GIVE ME A BREAK - I would like some of my weekend! I'm waiting for her to say something about the $$$ aspect of it and I'm going to FLIP OUT and tell her you have had 4 mo to get your act together - WHAT more do you want from me --- Oh - just a shout out to vent. I love the idea of a waterproof cast so h can still take her baths - but we'll see! Sorry to sound so nasty - just at my wits ends with this whole situation! Thank for responding! & h <basketsnboyds@...> wrote: I'll put my two

cents in- Evan went in at 6:30 and was the first one as well. He was out by 9 (they took him down at 7:15). We were d/c completely by 2:30 and by that time he'd been completely trimmed and they applied the tape and moleskin! Good luck Stablein <mariahmarieinpa@...> wrote: Hello, Yes h gets her first cast on next Thursday 3/30. I think Jane may have accidentally over spoke cause I explained what I knew about Idiopathic vs Congenital - at least I do know if there were malformations it is considered to be congenital. We will be at Shriners by 6:30 am and she will probably go in by 8:30 - 9:00 only one baby ahead of her. Are you generally there all day? I know Cole started casting so very young - h is almost 18 mos and I know it is going to make her so mad when she can not

climb up on the stuff she does now. Is Cole walking? You are still in Cleveland right? You and I are so fortunate to be close to Shriners her in Erie - so many forks travel from so far away! Thank You, & h Baird <michelle_r_baird@...> wrote: Hey ,Happy to hear h's MRI results came back clear of any other malformations other than the scoli. Does h have a casting date? Next Thurs.?I'm not sure why Jane said just to call it infantile, because if it is just scoliosis only with no malformations, it is idiopathic. Idiopathic just means no known cause. Anyways, I met Jane yesterday. I like her a lot. Very nice.Good luck with everything. and Cole Stablein <mariahmarieinpa@...> wrote: Hello, So happy to hear Ian is doing good! I hope Cole's skin heals quickly - keep us posted on his potential new cast. So happy for you both! I just spoke to Jane and she said h's MRI results were normal (except the scolio) she said I should just call it Infantile - not idiopathic or congenital? She is going to ask Dr. Khoury if he would consider the fiberglass cast for h! She said it is just as aggressive - the thought of her being able to be properly bathed puts my mind at ease - I fear mom may not be consistant with the hygiene and I would hate for her to develop infections because of this. I have a long way to go where the trust issue is concerned w/ h's mom. All set for next Thursday - please keep her in your prayers that she stays healthy - I do not want this to be prolonged anymore - as I'm sure you

can imagine this has been a waiting game for 4 mos now on something that should of been addressed over a year ago. let me know how you make out with the new cast! Best wishes to you all. & h Claflin <noellesmommy@...> wrote: We're back from Erie and boy was it a loooong trip. Anyway, he is making excellent progress and we couldn't be happier! In January, he was 26 degrees out of cast and yesterday he was 15 degrees!!! Yay!!! They also wanted to try out a fiberglass cast that is waterproof on Ian. It's the first one they have done like that, so Ian was the guinea pig. I hope I don't regret it since the plaster was working so well for him, but they thought he would be a good candidate to

try since his curve is doing so well and because we live in a warmer area. Let me tell you, this cast is soooo thin! It hardly weighs anything. I also had them trim a lot, and now I am scared that I had her take too much off. Being a guinea pig is not always the best of situations however. Taping of this cast did not go well. They didn't use enough of the stocking net under the cast, so they had trouble tacking it to the outside of the cast. got called away and another nurse came in and totally messed it up. They had to pull all of the taping off that the second nurse did and redo it since the tape was sticking to Ian's skin and the cotton padding wasn't covered by the stocking net. As you can imagine, it was traumatic for Ian. By the end of it, he actually fell asleep for the final taping because he screamed and cried himself out. So, supposedly I can bathe him and let him go swimming. He can't go

into a lake or ocean water or anything like that, but he can do baths and go into chlorinated pools. I just have to make sure he is upright for an hour afterwards to make sure the water all drains out. I am kind of nervous to try it out though! He also said if we want to coordinate a vacation around the time of his next casting we can get the cast taken off for a week so that he could enjoy the beach. I also asked how many more casts he estimated Ian would be in and he thought maybe only two!! Although, he was quick to tell me that this was just a guess and not to get my hopes up too much. Oh, and in this cast we didn't get anymore correction...he's 8 degrees in this one. Sorry for being so longwinded! I do have some pictures, but I need to get some sleep and will post them tomorrow. BTW, they are planning to try more of the fiberglass casts this week if the material come in, so I will be interested to see if they try it on Cole or not. I know they were planning on trying it on the other boy from Virginia that arrived the day that Jake and Ian were casted. Noelle (12-2-01)Ian (8-15-04) Messenger with Voice. PC-to-Phone calls for ridiculously low rates. New Messenger with Voice. Call regular phones from your PC and save

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No prob- I know how it is sometimes! I feel kind of crazy on my end wondring if the way Evan is responding to his cast is normal stuff (they're going to trim him locally next week under the arm and under the chin where it's rubbing blisters), he's somewhat constipated and unhappy when he eats and then the cast has moved-like it's shifted (I couldn't get a finger in there last week-now I can and can almost get my whole hand in the cut out area in the back?????)Who knows. I would LOVE the waterproof cast if we had been given the option, if the same correction could be achieved, I would've jumped on it and hope they'll do it for Ev in May when we return. Good luck next Thurs-I'll be thinking of you and h (we are going to Duke that day to have Ev trimmed)- Make sure they trim her up enough- it's hard to tell at the time! and Evan Stablein <mariahmarieinpa@...> wrote: Hello , I'm sorry I responded to the entire group about the MRI last Thursday. I was in the room with her because mom could not be because she is pregnant and h woke up about 40 min into it - they gave her so much medication that at 9:30 pm she still could not walk! Loved the pic of you w/Evan - hope he is doing well - what do you think about this fiberglass waterproof cast? h's mother has taken on the KNOW -IT -ALL CONCERNED Role all of a sudden - it really repulses me - the other day she had the nerve to ask me if I had given h her vitamins - I said " OH - now your the prim & proper mommy" she said I am a good mommy - now that I am not sad (yeah no drugs now that she is pregnant) I told her in return well I'm a lousy mommy so feel free to take over at anytime LOL! h still

looks at me like I'm her mom - I think if it was not for h I would completely faze this women out of my life - I feel so phony when I talk to her or have to deal w/ her anymore. She tried telling me she was gonna work on Sunday nights and I said like hell you are and she had the nerve to ask WHY - I said you are already working Saturday's till 5 pm - GIVE ME A BREAK - I would like some of my weekend! I'm waiting for her to say something about the $$$ aspect of it and I'm going to FLIP OUT and tell her you have had 4 mo to get your act together - WHAT more do you want from me --- Oh - just a shout out to vent. I love the idea of a waterproof cast so h can still take her baths - but we'll see! Sorry to sound so nasty - just at my wits ends with this whole situation! Thank for responding! & h <basketsnboyds@...> wrote: I'll put my two cents in- Evan went in at 6:30 and was the first one as well. He was out by 9 (they took him down at 7:15). We were d/c completely by 2:30 and by that time he'd been completely trimmed and they applied the tape and moleskin! Good luck Stablein <mariahmarieinpa@...> wrote: Hello, Yes h gets her first cast on next Thursday 3/30. I think Jane may have accidentally over spoke cause I explained what I knew about Idiopathic vs Congenital - at least I do know if there were malformations it is considered to be congenital. We will be at Shriners by 6:30 am and she will probably go in by 8:30 - 9:00 only one baby ahead of her. Are you generally there all day? I know Cole started casting so very young - h

is almost 18 mos and I know it is going to make her so mad when she can not climb up on the stuff she does now. Is Cole walking? You are still in Cleveland right? You and I are so fortunate to be close to Shriners her in Erie - so many forks travel from so far away! Thank You, & h Baird <michelle_r_baird@...> wrote: Hey ,Happy to hear h's MRI results came back clear of any other malformations other than the scoli. Does h have a casting date? Next Thurs.?I'm not sure why Jane said just to call it infantile, because if it is just scoliosis only with no malformations, it is idiopathic. Idiopathic just means no known cause. Anyways, I met Jane yesterday. I like her a lot. Very nice.Good luck with everything. and Cole Stablein

<mariahmarieinpa@...> wrote: Hello, So happy to hear Ian is doing good! I hope Cole's skin heals quickly - keep us posted on his potential new cast. So happy for you both! I just spoke to Jane and she said h's MRI results were normal (except the scolio) she said I should just call it Infantile - not idiopathic or congenital? She is going to ask Dr. Khoury if he would consider the fiberglass cast for h! She said it is just as aggressive - the thought of her being able to be properly bathed puts my mind at ease - I fear mom may not be consistant with the hygiene and I would hate for her to develop infections because of this. I have a long way to go where the trust issue is concerned w/ h's mom. All set for next Thursday - please keep her in your

prayers that she stays healthy - I do not want this to be prolonged anymore - as I'm sure you can imagine this has been a waiting game for 4 mos now on something that should of been addressed over a year ago. let me know how you make out with the new cast! Best wishes to you all. & h Claflin <noellesmommy@...> wrote: We're back from Erie and boy was it a loooong trip. Anyway, he is making excellent progress and we couldn't be happier! In January, he was 26 degrees out of cast and yesterday he was 15 degrees!!! Yay!!! They also wanted to try out a fiberglass cast that is waterproof on Ian. It's the first one they have done like that, so Ian was the guinea pig. I hope I don't regret it

since the plaster was working so well for him, but they thought he would be a good candidate to try since his curve is doing so well and because we live in a warmer area. Let me tell you, this cast is soooo thin! It hardly weighs anything. I also had them trim a lot, and now I am scared that I had her take too much off. Being a guinea pig is not always the best of situations however. Taping of this cast did not go well. They didn't use enough of the stocking net under the cast, so they had trouble tacking it to the outside of the cast. got called away and another nurse came in and totally messed it up. They had to pull all of the taping off that the second nurse did and redo it since the tape was sticking to Ian's skin and the cotton padding wasn't covered by the stocking net. As you can imagine, it was traumatic for Ian. By the end of it, he actually fell asleep for the final taping because he screamed and

cried himself out. So, supposedly I can bathe him and let him go swimming. He can't go into a lake or ocean water or anything like that, but he can do baths and go into chlorinated pools. I just have to make sure he is upright for an hour afterwards to make sure the water all drains out. I am kind of nervous to try it out though! He also said if we want to coordinate a vacation around the time of his next casting we can get the cast taken off for a week so that he could enjoy the beach. I also asked how many more casts he estimated Ian would be in and he thought maybe only two!! Although, he was quick to tell me that this was just a guess and not to get my hopes up too much. Oh, and in this cast we didn't get anymore correction...he's 8 degrees in this one. Sorry for being so longwinded! I do have some pictures, but I need to get

some sleep and will post them tomorrow. BTW, they are planning to try more of the fiberglass casts this week if the material come in, so I will be interested to see if they try it on Cole or not. I know they were planning on trying it on the other boy from Virginia that arrived the day that Jake and Ian were casted. Noelle (12-2-01)Ian (8-15-04) Messenger with Voice. PC-to-Phone calls for ridiculously low rates. New Messenger with Voice. Call regular phones from your PC and save big. New Messenger with Voice. Call regular phones from your PC and save big. Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. New Messenger with Voice. Call regular phones from your PC and save

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, I think if his curve is doing well enough and they have the materials there, they will offer it to you. I know they only had enough material to do Ian when I was there and they were waiting on a shipment and were hoping to do the other boy from VA the next day provided the material got there in time.

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

Re: Re: & Evan

No prob- I know how it is sometimes! I feel kind of crazy on my end wondring if the way Evan is responding to his cast is normal stuff (they're going to trim him locally next week under the arm and under the chin where it's rubbing blisters), he's somewhat constipated and unhappy when he eats and then the cast has moved-like it's shifted (I couldn't get a finger in there last week-now I can and can almost get my whole hand in the cut out area in the back?????)Who knows.

I would LOVE the waterproof cast if we had been given the option, if the same correction could be achieved, I would've jumped on it and hope they'll do it for Ev in May when we return.

Good luck next Thurs-I'll be thinking of you and h (we are going to Duke that day to have Ev trimmed)- Make sure they trim her up enough- it's hard to tell at the time!

and Evan Stablein <mariahmarieinpa@...> wrote:

Hello ,

I'm sorry I responded to the entire group about the MRI last Thursday. I was in the room with her because mom could not be because she is pregnant and h woke up about 40 min into it - they gave her so much medication that at 9:30 pm she still could not walk! Loved the pic of you w/Evan - hope he is doing well - what do you think about this fiberglass waterproof cast? h's mother has taken on the KNOW -IT -ALL CONCERNED Role all of a sudden - it really repulses me - the other day she had the nerve to ask me if I had given h her vitamins - I said " OH - now your the prim & proper mommy" she said I am a good mommy - now that I am not sad (yeah no drugs now that she is pregnant) I told her in return well I'm a lousy mommy so feel free to take over at anytime LOL! h still looks at me like I'm her mom - I think if it was not for h I would completely faze this women out of my life - I feel so phony when I talk to her or have to deal w/ her anymore. She tried telling me she was gonna work on Sunday nights and I said like hell you are and she had the nerve to ask WHY - I said you are already working Saturday's till 5 pm - GIVE ME A BREAK - I would like some of my weekend! I'm waiting for her to say something about the $$$ aspect of it and I'm going to FLIP OUT and tell her you have had 4 mo to get your act together - WHAT more do you want from me ---

Oh - just a shout out to vent. I love the idea of a waterproof cast so h can still take her baths - but we'll see!

Sorry to sound so nasty - just at my wits ends with this whole situation!

Thank for responding!

& h <basketsnboyds@...> wrote:

I'll put my two cents in-

Evan went in at 6:30 and was the first one as well. He was out by 9 (they took him down at 7:15). We were d/c completely by 2:30 and by that time he'd been completely trimmed and they applied the tape and moleskin!

Good luck Stablein <mariahmarieinpa@...> wrote:

Hello,

Yes h gets her first cast on next Thursday 3/30. I think Jane may have accidentally over spoke cause I explained what I knew about Idiopathic vs Congenital - at least I do know if there were malformations it is considered to be congenital. We will be at Shriners by 6:30 am and she will probably go in by 8:30 - 9:00 only one baby ahead of her. Are you generally there all day? I know Cole started casting so very young - h is almost 18 mos and I know it is going to make her so mad when she can not climb up on the stuff she does now. Is Cole walking? You are still in Cleveland right? You and I are so fortunate to be close to Shriners her in Erie - so many forks travel from so far away!

Thank You,

& h Baird <michelle_r_baird@...> wrote:

Hey ,Happy to hear h's MRI results came back clear of any other malformations other than the scoli. Does h have a casting date? Next Thurs.?I'm not sure why Jane said just to call it infantile, because if it is just scoliosis only with no malformations, it is idiopathic. Idiopathic just means no known cause. Anyways, I met Jane yesterday. I like her a lot. Very nice.Good luck with everything. and Cole Stablein <mariahmarieinpa@...> wrote:

Hello,

So happy to hear Ian is doing good! I hope Cole's skin heals quickly - keep us posted on his potential new cast. So happy for you both! I just spoke to Jane and she said h's MRI results were normal (except the scolio) she said I should just call it Infantile - not idiopathic or congenital? She is going to ask Dr. Khoury if he would consider the fiberglass cast for h! She said it is just as aggressive - the thought of her being able to be properly bathed puts my mind at ease - I fear mom may not be consistant with the hygiene and I would hate for her to develop infections because of this. I have a long way to go where the trust issue is concerned w/ h's mom. All set for next Thursday - please keep her in your prayers that she stays healthy - I do not want this to be prolonged anymore - as I'm sure you can imagine this has been a waiting game for 4 mos now on something that should of been addressed over a year ago. let me know how you make out with the new cast!

Best wishes to you all.

& h Claflin <noellesmommy@...> wrote:

We're back from Erie and boy was it a loooong trip. Anyway, he is making excellent progress and we couldn't be happier! In January, he was 26 degrees out of cast and yesterday he was 15 degrees!!! Yay!!! They also wanted to try out a fiberglass cast that is waterproof on Ian. It's the first one they have done like that, so Ian was the guinea pig. I hope I don't regret it since the plaster was working so well for him, but they thought he would be a good candidate to try since his curve is doing so well and because we live in a warmer area. Let me tell you, this cast is soooo thin! It hardly weighs anything. I also had them trim a lot, and now I am scared that I had her take too much off. Being a guinea pig is not always the best of situations however. Taping of this cast did not go well. They didn't use enough of the stocking net under the cast, so they had trouble tacking it to the outside of the cast. got called away and another nurse came in and totally messed it up. They had to pull all of the taping off that the second nurse did and redo it since the tape was sticking to Ian's skin and the cotton padding wasn't covered by the stocking net. As you can imagine, it was traumatic for Ian. By the end of it, he actually fell asleep for the final taping because he screamed and cried himself out. So, supposedly I can bathe him and let him go swimming. He can't go into a lake or ocean water or anything like that, but he can do baths and go into chlorinated pools. I just have to make sure he is upright for an hour afterwards to make sure the water all drains out. I am kind of nervous to try it out though! He also said if we want to coordinate a vacation around the time of his next casting we can get the cast taken off for a week so that he could enjoy the beach. I also asked how many more casts he estimated Ian would be in and he thought maybe only two!! Although, he was quick to tell me that this was just a guess and not to get my hopes up too much. Oh, and in this cast we didn't get anymore correction...he's 8 degrees in this one.

Sorry for being so longwinded! I do have some pictures, but I need to get some sleep and will post them tomorrow.

BTW, they are planning to try more of the fiberglass casts this week if the material come in, so I will be interested to see if they try it on Cole or not. I know they were planning on trying it on the other boy from Virginia that arrived the day that Jake and Ian were casted.

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

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