Re: Zehava & Binyamin

[Guest guest]

Hello and group

Our meeting with Dr. Cahill in Phili was certainly productive and they are hoping to cast Binyamin next Thursday. It seems his curve is already 58 degrees with a RVAD of approx 30 degrees, and we should have probably casted six months ago!!!! This makes us upset because we went to HOSPITAL FOR SPECIAL SURGERY- the best of orthopedics in NY- right??? ( I thought that to as I work in the rehabiliation field as an Occupational Therapist myself) but they clearly measured the curve incorrectly AND advised us incorrectly of being able to "wait and see" since it seemed to improve- BALONEY!!! This is just to warn others- ask, ask, and ask and dont assume by reputation!!! The casting probably would have been effective six months ago but now at 23 months old there is no way to know. I guess we can only look ahead and warn others not to get stuck in the same situation

SOME PRACTICAL QUESTIONS FOR THE GROUP:

How and where do you bathe your children when in a cast?

what kind of PJ's do you find are best ( for two year olds)?

any specific suggestions for bibs for eating- i would hate for food to be stuck for two months?

any diapering advice would be greatly appreciated

thanksin advance

Zehava

[Guest guest]

I'm sorry the first doctor delayed you on your journey, however congratulations on getting into Shriners.  I found 1 piece jammies were the easiest for us. In terms of bathing we did sponge baths.  I shaved my son's head, so I could easily wipe it clean with a wet washcloth! I would use waterproof bibs. 

In terms of diapering we started out with pampers easy ups which worked well, we tucked them under the cast.  We eventually switched to cloth diapers which worked AMAZINGLY! They were our favorite. We liked them so much we even used them for our second baby. 

Jenn Mommy to Cole & Max

[Guest guest]

Hey--

We started casting Logan at 9 months old. He is now a little over 2.

-We bathe Logan at the sink. I take his changing table cushion and lay it next to the sink and wash his hair beautician style. I sponge the rest of him off and let him play in the sink with his feet and hands.

-PJs--for the summer, fall and spring--He just wears a size bigger tee shirt. Logan is a little hot natured, so that helps him not get too hot. We also live in NC, so we dont see too much of the really cold weather. During the winter, We use one pieces, made of 100% cotton. The fleece ones are just too hot for him. Again, 1 size up.

-We used waterproof bibs when he was smaller, we dont use anything now. Usually his shirts and overalls give him about 2 layers to get through.

-With diapering--we used the super absorbant pampers and kept him in the smaller size and changed frequently to avoid spillage. Those (knock on wood) have been great for Logan. No huge accidents in 19 months of casting so far. The dr expects us to cast for 24 months. Hope this helps!

,

Logan, Dylan and Austi's mama (45 down to 9 out of cast, 2 years old, 10 casts.)

From: zehava witkin <zwitkin@...>"infantile scoliosis treatment " <infantile scoliosis treatment >Sent: Wednesday, November 2, 2011 8:40 PMSubject: Re: Zehava & Binyamin

Hello and group

Our meeting with Dr. Cahill in Phili was certainly productive and they are hoping to cast Binyamin next Thursday. It seems his curve is already 58 degrees with a RVAD of approx 30 degrees, and we should have probably casted six months ago!!!! This makes us upset because we went to HOSPITAL FOR SPECIAL SURGERY- the best of orthopedics in NY- right??? ( I thought that to as I work in the rehabiliation field as an Occupational Therapist myself) but they clearly measured the curve incorrectly AND advised us incorrectly of being able to "wait and see" since it seemed to improve- BALONEY!!! This is just to warn others- ask, ask, and ask and dont assume by reputation!!! The casting probably would have been effective six months ago but now at 23 months old there is no way to know. I guess we can only look ahead and warn others not to get stuck in the same situation

SOME PRACTICAL QUESTIONS FOR THE GROUP:

How and where do you bathe your children when in a cast?

what kind of PJ's do you find are best ( for two year olds)?

any specific suggestions for bibs for eating- i would hate for food to be stuck for two months?

any diapering advice would be greatly appreciated

thanksin advance

Zehava

[Guest guest]

thanks so much for the practical advice i am sure i will have many more

questions.

in terms of diapers,you used smaller and then tuck the diaper inside the cast?

thanks again

zehava

>

> Hey--

> We started casting Logan at 9 months old. He is now a little over 2.

> -We bathe Logan at the sink. I take his changing table cushion and lay it next

to the sink and wash his hair beautician style. I sponge the rest of him off and

let him play in the sink with his feet and hands.

> -PJs--for the summer, fall and spring--He just wears a size bigger tee shirt.

Logan is a little hot natured, so that helps him not get too hot. We also live

in NC, so we dont see too much of the really cold weather. During the winter, We

use one pieces, made of 100% cotton. The fleece ones are just too hot for him.

Again, 1 size up.

> -We used waterproof bibs when he was smaller, we dont use anything now.

Usually his shirts and overalls give him about 2 layers to get through.

> -With diapering--we used the super absorbant pampers and kept him in the

smaller size and changed frequently to avoid spillage. Those (knock on wood)

have been great for Logan. No huge accidents in 19 months of casting so far. The

dr expects us to cast for 24 months.

> Hope this helps!

>  

> ,

> Logan, Dylan and Austi's mama (45 down to 9 out of cast, 2 years old, 10

casts.)

>

> ________________________________

> From: zehava witkin <zwitkin@...>

> " infantile scoliosis treatment "

<infantile scoliosis treatment >

> Sent: Wednesday, November 2, 2011 8:40 PM

> Subject: Re: Zehava & Binyamin

>

>

>  

> Hello and group

> Our meeting with Dr. Cahill in Phili was certainly productive and they are

hoping to cast Binyamin next Thursday.  It seems his curve is already 58

degrees with a RVAD of approx 30 degrees, and we should have probably casted six

months ago!!!! This makes us upset because we went to HOSPITAL FOR SPECIAL

SURGERY- the best of orthopedics in NY- right???  ( I thought that to as I work

in the rehabiliation field as an Occupational Therapist myself) but they clearly

measured the curve incorrectly AND advised us incorrectly of being able to " wait

and see " since it seemed to improve- BALONEY!!!  This is just to warn others-

ask, ask, and ask and dont assume by reputation!!! The casting probably would

have been effective six months ago but now at 23 months old there is no way to

know.  I guess we can only look ahead and warn others not to get stuck in the

same situation

>  

> SOME PRACTICAL QUESTIONS FOR THE GROUP:

>

> How and where do you bathe your children when in a cast?

>

> what kind of PJ's do you find are best ( for two year olds)?

>

> any specific suggestions for bibs for eating- i would hate for food to be

stuck for two months?

>

> any diapering advice would be greatly appreciated

>

> thanksin advance

>

> Zehava

>

[Guest guest]

Hi Zehava,

 

I think it's great that you went with your instincts.  I know it stinks thinking about " what could've been " , but you are now on the right track.  Here's what has worked for our family so far:

 

How and where do you bathe your children when in a cast? On the floor or bed, on a towel...we use a basin of warm soapy water and favorite washcloth (Disney Princess!!) and spongebathe...lotion...we make it Layla's " special " time.

 what kind of PJ's do you find are best ( for two year olds)? We have found that pajama dresses and undies over her diaper work best.  Maybe a t-shirt and undies or long-johns for your son?  It's hard buying 2 piece sets because we need a bigger top to fit over cast, and smaller bottoms because she has a tiny hiney anyway!!

 any specific suggestions for bibs for eating- i would hate for food to be stuck for two months? We've used a variety of bibs and as long as we kept the front as close to her neck as possible to prevent crumbs going in, they've all worked fine.  I also kind of dig around inside her cast when I bathe her, try to get crumbs out, rub her back, etc...

 any diapering advice would be greatly appreciated...I guess we just diaper normally, except the diaper is a little lower on the hips.  I also keep a diaper cover or pair of undies over them.  I've found that it helps the diaper from being saggy since it's lower than normal. 

 

Hope this helps you!!!  Remember to keep us posted on your baby boy!!

 

~ T., mommy to Layla Rayne

[Guest guest]

Hi Zehava,

 

I think it's great that you went with your instincts.  I know it stinks thinking about " what could've been " , but you are now on the right track.  Here's what has worked for our family so far:

 

How and where do you bathe your children when in a cast? On the floor or bed, on a towel...we use a basin of warm soapy water and favorite washcloth (Disney Princess!!) and spongebathe...lotion...we make it Layla's " special " time.

 what kind of PJ's do you find are best ( for two year olds)? We have found that pajama dresses and undies over her diaper work best.  Maybe a t-shirt and undies or long-johns for your son?  It's hard buying 2 piece sets because we need a bigger top to fit over cast, and smaller bottoms because she has a tiny hiney anyway!!

 any specific suggestions for bibs for eating- i would hate for food to be stuck for two months? We've used a variety of bibs and as long as we kept the front as close to her neck as possible to prevent crumbs going in, they've all worked fine.  I also kind of dig around inside her cast when I bathe her, try to get crumbs out, rub her back, etc...

 any diapering advice would be greatly appreciated...I guess we just diaper normally, except the diaper is a little lower on the hips.  I also keep a diaper cover or pair of undies over them.  I've found that it helps the diaper from being saggy since it's lower than normal. 

 

Hope this helps you!!!  Remember to keep us posted on your baby boy!!

 

~ T., mommy to Layla Rayne

[Guest guest]

Bathing: I use a contoured changing pad and put a towel on the top of it. I put it on the kitchen counter by the sink. I wash 's hair first, then sponge his body. I have a stash of small toys on the window sill that he can reach and play with. PJ's: When it's warm, we just do a pair of shorts. In the winter, we do two piece cotton jammies. is a pretty warm sleeper, so footies are too hot for us. Bibs: IKEA has great bibs. They are long sleeve, waterproof, they velcro around the neck and are long in the front with a pocket at the bottom....they look similar to a painting smock. They work really well for us, wash easy and are inexpensive. In casts 1-4 we used two diapers. The inside diaper was a size smaller, tabs ripped off so they didn't irritate the skin, then tucked inside the cast front and back. Then the next size up diaper would go over it and just put on like normal. In the cast we are in now, we are able to use one diaper with the front folded down. However, we have had more potty leaks this way than we have ever had. We use pampers baby dry diapers. Good luck next Thursday! It will take some time to adjust to casting, not only for Binyamin, but the whole family....but once you get used to it, it will become your new normal and everyone will do great! I really had a hard time believing that at first....but it turns out, it was true.

Ann Boros

www.curvybaby.comjayann_24@... To: infantile scoliosis treatment From: zwitkin@...Date: Wed, 2 Nov 2011 17:40:33 -0700Subject: Re: Zehava & Binyamin

Hello and group

Our meeting with Dr. Cahill in Phili was certainly productive and they are hoping to cast Binyamin next Thursday. It seems his curve is already 58 degrees with a RVAD of approx 30 degrees, and we should have probably casted six months ago!!!! This makes us upset because we went to HOSPITAL FOR SPECIAL SURGERY- the best of orthopedics in NY- right??? ( I thought that to as I work in the rehabiliation field as an Occupational Therapist myself) but they clearly measured the curve incorrectly AND advised us incorrectly of being able to "wait and see" since it seemed to improve- BALONEY!!! This is just to warn others- ask, ask, and ask and dont assume by reputation!!! The casting probably would have been effective six months ago but now at 23 months old there is no way to know. I guess we can only look ahead and warn others not to get stuck in the same situation

SOME PRACTICAL QUESTIONS FOR THE GROUP:

How and where do you bathe your children when in a cast?

what kind of PJ's do you find are best ( for two year olds)?

any specific suggestions for bibs for eating- i would hate for food to be stuck for two months?

any diapering advice would be greatly appreciated

thanksin advance

Zehava

[Guest guest]

Dear Zehava:

I can SOOOO relate to how you're feeling! We also started with the false hope to "wait and see," only to be horrified later. I really do wish there was a little more awareness out there about the seriousness of our children's condition. It would have been nice to know about earier.

Our daughter was 23 months old with a 60 degree curve when she first started about 7 months ago, too. Yes, the first 10 days after the first cast just broke my heart, but meanwhile, she gradually adapted and by the end of two weeks, things were pretty much back to "normal." Children really are very resilient.

I can identify with the frustration and agony of "what if?" I really wish we had known to start casting 6 months earlier, too. However, we are seeing some improvement in her curve, albeit slow, and I have heard of improvement in worse cases, so let's not lose hope! You're not alone.

As far as diapering goes: we us pull-ups. They stay on the best. We're also currently working on potty training, which is going slower than I had hoped with the casting.

I agree with others about making sponge baths a special and fun time. Sometimes I let her stand in the empty bathtub while I wash her, so she can think she's taking a "shower," just like Mommy!

Hang in there!

~

[Guest guest]

....Really, before you know it, your son won't even notice the cast -- and it won't hold him back from playing and having fun, either (beware the pea gravel in playgrounds, though. It's a dangerous temptation for my little girl, at least. She always wants to try and throw it up over her head and roll around in it... /-!