Re: Re: h in Erie

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, Your post made me emotional. Justed wanted you to know how much I think of you being an angel in h's life. You have truly found treatment for her that will change her life and you should be very proud of that. h is blessed to have you and hopefully you can always be an influence in her life even if she is with her mom. I pray that her mom will also step up and be the kind of mom h deserves. God bless you for what you have done. and Cle Stablein <mariahmarieinpa@...> wrote: Hello Group, I'm so sorry to hear about Sol's skin Joy - that is so scary for all of us to hear. I am so glad you will be coming here and getting her treated at Shriners. I will continue to check in on everyone - but I will not be as active as h is going back w/

her mom today. I am so emotional and last night after I put her to bed for the last time - I really lost it! I was looking forward to getting my life back - but the adjustment is going to take a while - I know there will be an extreme void in my life! She is in daycare now and has already gotten sick from all the snot nosed kids. As everyone knows Children Services is involved and they will be keeping close tabs on h. I pray for all your beautiful - special babies and I will try to stay in touch with everyone on h's casting progress. At least I was her ANGEL and stood up and made sure she got the care and attention she so desperatly needed. Best Wishes to Everyone! mosunshinebaby <mosunshinebaby@...> wrote: Hi , That's strange, Sol's

fiberglass cast stayed pretty solid/sturdy, never loosened up at all or w/water, if anything got tighter the longer she was in it, it was super super tight to begin with too. That seems very loose to be able to fit your whole hand in? Did you here back from Dr. K as to what his thoughts are on it's state of effectiveness now? Well maybe the loosnes is a GOOD thing if it's still doing it's job of holding his curve because I just had one of the worst experiences yet through our scoli. journey so far... Sol has had 2 spells of what they've diagnosed as infant breathe holding since she's had this cast on & the first time intuition told me it was b/c of the cast b/c it seemed to be ailing/frustrating her so bad that it brought on the breathe holding spell & she was observed over night, respitory & all other functions were fine.. the 2nd one she just had this past Thurs. night & I strongly felt it was

something about the cast that was putting her in extreme pain to a point of her getting so upset that she had the breathe holding spell (I'm wondering now if it was more of shock or something). So after speaking w/a few Ortho's @ the hospital about my feelings of it being the cast they agreed it could be something to do w/it & agreed with my inquiry of the possibility of having it off a week before we were scheduled (which was next Fri.) Even though they agreed a week and a half probably wouldn't effect her curve progression too much I was still second guessing taking it off but did it anyway b/c of the feeling I had of it bringing her such pain. And after sawing the cast off we had to literally peel the liner from her RAW side that it went down in addition to some other areas, I couldn not BELIEVE what I was seeing underneath & the extreme pain she seemed to be in... her skin looked like first degree

burns I couldn't believe it & was freaking out like, is this normal?? I've heard people here talk about letting the skin heel, is this why?? Well I really doubt that this is typical w/the plaster casts because there's no Gortex liner & water invloved.. but what you were saying about you would think the skin would rott from the moisture & liner is pretty much what happened & it was horrible and gory. They said it was from water & not getting dried good enough even though I did EVERYTHING exactly how they told me to with letting her air dry & dry w/a blow dryer too.. The fact of the matter is that the cast was so incredibly TIGHT by the time we removed it (going on 3 mos. now) that I could see how it would be impossible to drain completely.. But the way the liner was explained to me was the way it explains it from that site I sent you, and they said it's not typical for that

to happen. I'm wondering in our case if it's simply because it was just too tight, but at the same I wanted to let you and everyone else know what happened.. It was pretty horrible the day of removal but then the next morning when I removed the bandages it looked A LOT better & hardened up (rather than raw) & I was able to bathe her & let it air dry to where it was all hardening over.. And she has been in no discomfort from it since the night of & then after her bath the next morning, every since. I can't believe the night & day difference from the cast removal just to 24 hrs. later, and today it's even better, I'm confident it will be healed enough to recast next Tues., but I would have never thought that after the initial removal, it was pretty horrible. So I don't know if such extreme rawness is normal or what but I just wanted to let you know, even though she's healed up real quick,

the severity of hers was blamed on not drying it out enough... if I had it to do over I would not have even bathed her (even though they said it's okay and I followed drying instructions to a T) I think it was just too much water exposure between the cast & skin to dry out enough.. And if they do end up using the fiber & gortex on her in Erie I will probably not submerse her in water at all, just keep her wiped down on hold her head back to keep her hair clean. I just wanted to share w/you so you're prepared & can make sure you dry him out super super good, or just try & avoid water all together. Again, she's been fine since the day after but the day of removal was pretty intense for us both, maybe this is normal w/any cast removal to some degree, but they did say it's not typical w/gortex unless they're not dried out really good, & again her cast was super skin tight too.. could only

fit a finger in... The fact that Ian's is so loose I was think helps the drying out part.I do believe the pain she was in underneath this cast though was the cause of her breathe holding episodes, like I said, I think more like shock she was going in to, so I'm glad it's OFF now, she's so happy & comfortable & there's not telling how bad it would have gotten in another week or what severity of shock or out of conciousness she would experience during the extra time not to mention there wouldn't have been enough time for it to heal if we stuck to it being removed on Fri. & recasted in Erie on Tues. I am however worried about any possible curve progression even though the Dr.'s don't seem to be. But we'll be flying out there next weekend & seeing Dr. on Mon., she'll get her new cast on Tues.. biding her skin is heeled in time which I'm praying it will be. Sorry about the novel here,

take care & be sure to dry Ian's out well!! I don't think you'll have a problem though since it's so loose, like I said in the beginning of this.. that may be a good thing for you guys as long as it's still working it's purpose of course. Take care ~Joy>> A day or two after I put Ian in the tub with his cast on, I noticed that it seems really loose. I notice it more when he is laying down. When he is laying down, I can put my whole hand inside the cast. The pointy parts that usually press on his stomach don't even touch him at all when he is laying down. Also, the thin strip at the top of the cast is pretty flexible when I press on it. It does seem better when he is upright, but I am concerned that it's not holding his curve. So, I just emailed Dr. K to see

what he thinks. I've never had our plaster casts loosen like this. Ugh. I really hope this doesn't mean they'll want to put a new one on him sooner than May. > > > Noelle (12-2-01)> Ian (8-15-04)> Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Messenger with Voice.

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,

I'm sorry...I am sure it will be an adjustment for both you and h. I am glad to hear that Children's services is involved. At least you know that they will make sure her mom is vigilant in following through with the casting. Best of luck to you and h.

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

Re: h in Erie

Hello Group,

I'm so sorry to hear about Sol's skin Joy - that is so scary for all of us to hear. I am so glad you will be coming here and getting her treated at Shriners. I will continue to check in on everyone - but I will not be as active as h is going back w/ her mom today. I am so emotional and last night after I put her to bed for the last time - I really lost it! I was looking forward to getting my life back - but the adjustment is going to take a while - I know there will be an extreme void in my life! She is in daycare now and has already gotten sick from all the snot nosed kids. As everyone knows Children Services is involved and they will be keeping close tabs on h. I pray for all your beautiful - special babies and I will try to stay in touch with everyone on h's casting progress. At least I was her ANGEL and stood up and made sure she got the care and attention she so desperatly needed.

Best Wishes to Everyone!

mosunshinebaby <mosunshinebaby@...> wrote:

Hi , That's strange, Sol's fiberglass cast stayed pretty solid/sturdy, never loosened up at all or w/water, if anything got tighter the longer she was in it, it was super super tight to begin with too. That seems very loose to be able to fit your whole hand in? Did you here back from Dr. K as to what his thoughts are on it's state of effectiveness now? Well maybe the loosnes is a GOOD thing if it's still doing it's job of holding his curve because I just had one of the worst experiences yet through our scoli. journey so far... Sol has had 2 spells of what they've diagnosed as infant breathe holding since she's had this cast on & the first time intuition told me it was b/c of the cast b/c it seemed to be ailing/frustrating her so bad that it brought on the breathe holding spell & she was observed over night, respitory & all other functions were fine.. the 2nd one she just had this past Thurs. night & I strongly felt it was something about the cast that was putting her in extreme pain to a point of her getting so upset that she had the breathe holding spell (I'm wondering now if it was more of shock or something). So after speaking w/a few Ortho's @ the hospital about my feelings of it being the cast they agreed it could be something to do w/it & agreed with my inquiry of the possibility of having it off a week before we were scheduled (which was next Fri.) Even though they agreed a week and a half probably wouldn't effect her curve progression too much I was still second guessing taking it off but did it anyway b/c of the feeling I had of it bringing her such pain. And after sawing the cast off we had to literally peel the liner from her RAW side that it went down in addition to some other areas, I couldn not BELIEVE what I was seeing underneath & the extreme pain she seemed to be in... her skin looked like first degree burns I couldn't believe it & was freaking out like, is this normal?? I've heard people here talk about letting the skin heel, is this why?? Well I really doubt that this is typical w/the plaster casts because there's no Gortex liner & water invloved.. but what you were saying about you would think the skin would rott from the moisture & liner is pretty much what happened & it was horrible and gory. They said it was from water & not getting dried good enough even though I did EVERYTHING exactly how they told me to with letting her air dry & dry w/a blow dryer too.. The fact of the matter is that the cast was so incredibly TIGHT by the time we removed it (going on 3 mos. now) that I could see how it would be impossible to drain completely.. But the way the liner was explained to me was the way it explains it from that site I sent you, and they said it's not typical for that to happen. I'm wondering in our case if it's simply because it was just too tight, but at the same I wanted to let you and everyone else know what happened.. It was pretty horrible the day of removal but then the next morning when I removed the bandages it looked A LOT better & hardened up (rather than raw) & I was able to bathe her & let it air dry to where it was all hardening over.. And she has been in no discomfort from it since the night of & then after her bath the next morning, every since. I can't believe the night & day difference from the cast removal just to 24 hrs. later, and today it's even better, I'm confident it will be healed enough to recast next Tues., but I would have never thought that after the initial removal, it was pretty horrible. So I don't know if such extreme rawness is normal or what but I just wanted to let you know, even though she's healed up real quick, the severity of hers was blamed on not drying it out enough... if I had it to do over I would not have even bathed her (even though they said it's okay and I followed drying instructions to a T) I think it was just too much water exposure between the cast & skin to dry out enough.. And if they do end up using the fiber & gortex on her in Erie I will probably not submerse her in water at all, just keep her wiped down on hold her head back to keep her hair clean. I just wanted to share w/you so you're prepared & can make sure you dry him out super super good, or just try & avoid water all together. Again, she's been fine since the day after but the day of removal was pretty intense for us both, maybe this is normal w/any cast removal to some degree, but they did say it's not typical w/gortex unless they're not dried out really good, & again her cast was super skin tight too.. could only fit a finger in... The fact that Ian's is so loose I was think helps the drying out part.I do believe the pain she was in underneath this cast though was the cause of her breathe holding episodes, like I said, I think more like shock she was going in to, so I'm glad it's OFF now, she's so happy & comfortable & there's not telling how bad it would have gotten in another week or what severity of shock or out of conciousness she would experience during the extra time not to mention there wouldn't have been enough time for it to heal if we stuck to it being removed on Fri. & recasted in Erie on Tues. I am however worried about any possible curve progression even though the Dr.'s don't seem to be. But we'll be flying out there next weekend & seeing Dr. on Mon., she'll get her new cast on Tues.. biding her skin is heeled in time which I'm praying it will be. Sorry about the novel here, take care & be sure to dry Ian's out well!! I don't think you'll have a problem though since it's so loose, like I said in the beginning of this.. that may be a good thing for you guys as long as it's still working it's purpose of course. Take care ~Joy>> A day or two after I put Ian in the tub with his cast on, I noticed that it seems really loose. I notice it more when he is laying down. When he is laying down, I can put my whole hand inside the cast. The pointy parts that usually press on his stomach don't even touch him at all when he is laying down. Also, the thin strip at the top of the cast is pretty flexible when I press on it. It does seem better when he is upright, but I am concerned that it's not holding his curve. So, I just emailed Dr. K to see what he thinks. I've never had our plaster casts loosen like this. Ugh. I really hope this doesn't mean they'll want to put a new one on him sooner than May. > > > Noelle (12-2-01)> Ian (8-15-04)>

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I am sorry to hear about h having gone back to her mother. I know you where and are her Angel. I do know what you are going through. I sure pray that h's mother keeps you more informed better than Jessie's mother has us. I want you to know that if you need to vent. I am here for you as you where for me. You accomplished a huge goal getting h in her first cast. Hopefully Childrens Services will stay on top of things and make sure h is getting her treatment. I wish we would had gotten them involved in our case. I want you to know I commend you for what you have done for h. We need more people in the world like you. Knowing your empty feelings, Jackie in Ohio Stablein <mariahmarieinpa@...> wrote: Hello Group, I'm so sorry to hear about Sol's

skin Joy - that is so scary for all of us to hear. I am so glad you will be coming here and getting her treated at Shriners. I will continue to check in on everyone - but I will not be as active as h is going back w/ her mom today. I am so emotional and last night after I put her to bed for the last time - I really lost it! I was looking forward to getting my life back - but the adjustment is going to take a while - I know there will be an extreme void in my life! She is in daycare now and has already gotten sick from all the snot nosed kids. As everyone knows Children Services is involved and they will be keeping close tabs on h. I pray for all your beautiful - special babies and I will try to stay in touch with everyone on h's casting progress. At least I was her ANGEL and stood up and made sure she got the care and attention she so desperatly needed. Best Wishes to Everyone! mosunshinebaby <mosunshinebaby@...> wrote: Hi , That's strange, Sol's fiberglass cast stayed pretty solid/sturdy, never loosened up at all or w/water, if anything got tighter the longer she was in it, it was super super tight to begin with too. That seems very loose to be able to fit your whole hand in? Did you here back from Dr. K as to what his thoughts are on it's state of effectiveness now? Well maybe the loosnes is a GOOD thing if it's still doing it's job of holding his curve because I just had one of the worst experiences yet through our scoli. journey so far... Sol has had 2 spells of what they've diagnosed as infant breathe holding since she's had this cast on & the first time intuition told me it was b/c of the cast b/c it seemed to be

ailing/frustrating her so bad that it brought on the breathe holding spell & she was observed over night, respitory & all other functions were fine.. the 2nd one she just had this past Thurs. night & I strongly felt it was something about the cast that was putting her in extreme pain to a point of her getting so upset that she had the breathe holding spell (I'm wondering now if it was more of shock or something). So after speaking w/a few Ortho's @ the hospital about my feelings of it being the cast they agreed it could be something to do w/it & agreed with my inquiry of the possibility of having it off a week before we were scheduled (which was next Fri.) Even though they agreed a week and a half probably wouldn't effect her curve progression too much I was still second guessing taking it off but did it anyway b/c of the feeling I had of it bringing her such pain. And after sawing the cast off

we had to literally peel the liner from her RAW side that it went down in addition to some other areas, I couldn not BELIEVE what I was seeing underneath & the extreme pain she seemed to be in... her skin looked like first degree burns I couldn't believe it & was freaking out like, is this normal?? I've heard people here talk about letting the skin heel, is this why?? Well I really doubt that this is typical w/the plaster casts because there's no Gortex liner & water invloved.. but what you were saying about you would think the skin would rott from the moisture & liner is pretty much what happened & it was horrible and gory. They said it was from water & not getting dried good enough even though I did EVERYTHING exactly how they told me to with letting her air dry & dry w/a blow dryer too.. The fact of the matter is that the cast was so incredibly TIGHT by the time we

removed it (going on 3 mos. now) that I could see how it would be impossible to drain completely.. But the way the liner was explained to me was the way it explains it from that site I sent you, and they said it's not typical for that to happen. I'm wondering in our case if it's simply because it was just too tight, but at the same I wanted to let you and everyone else know what happened.. It was pretty horrible the day of removal but then the next morning when I removed the bandages it looked A LOT better & hardened up (rather than raw) & I was able to bathe her & let it air dry to where it was all hardening over.. And she has been in no discomfort from it since the night of & then after her bath the next morning, every since. I can't believe the night & day difference from the cast removal just to 24 hrs. later, and today it's even better, I'm confident it will be healed enough to recast next

Tues., but I would have never thought that after the initial removal, it was pretty horrible. So I don't know if such extreme rawness is normal or what but I just wanted to let you know, even though she's healed up real quick, the severity of hers was blamed on not drying it out enough... if I had it to do over I would not have even bathed her (even though they said it's okay and I followed drying instructions to a T) I think it was just too much water exposure between the cast & skin to dry out enough.. And if they do end up using the fiber & gortex on her in Erie I will probably not submerse her in water at all, just keep her wiped down on hold her head back to keep her hair clean. I just wanted to share w/you so you're prepared & can make sure you dry him out super super good, or just try & avoid water all together. Again, she's been fine since the day after but the day of removal

was pretty intense for us both, maybe this is normal w/any cast removal to some degree, but they did say it's not typical w/gortex unless they're not dried out really good, & again her cast was super skin tight too.. could only fit a finger in... The fact that Ian's is so loose I was think helps the drying out part.I do believe the pain she was in underneath this cast though was the cause of her breathe holding episodes, like I said, I think more like shock she was going in to, so I'm glad it's OFF now, she's so happy & comfortable & there's not telling how bad it would have gotten in another week or what severity of shock or out of conciousness she would experience during the extra time not to mention there wouldn't have been enough time for it to heal if we stuck to it being removed on Fri. & recasted in Erie on Tues. I am however worried about any possible curve progression even though the

Dr.'s don't seem to be. But we'll be flying out there next weekend & seeing Dr. on Mon., she'll get her new cast on Tues.. biding her skin is heeled in time which I'm praying it will be. Sorry about the novel here, take care & be sure to dry Ian's out well!! I don't think you'll have a problem though since it's so loose, like I said in the beginning of this.. that may be a good thing for you guys as long as it's still working it's purpose of course. Take care ~Joy>> A day or two after I put Ian in the tub with his cast on, I noticed that it seems really loose. I notice it more when he is laying down. When he is laying down, I can put my whole hand inside the cast. The pointy parts that usually press on his stomach don't even touch him at all when he

is laying down. Also, the thin strip at the top of the cast is pretty flexible when I press on it. It does seem better when he is upright, but I am concerned that it's not holding his curve. So, I just emailed Dr. K to see what he thinks. I've never had our plaster casts loosen like this. Ugh. I really hope this doesn't mean they'll want to put a new one on him sooner than May. > > > Noelle (12-2-01)> Ian (8-15-04)> Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Messenger with Voice.

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