Re: Cole and the Crooked Flower!

[Guest guest]

You are SO SO SO welcome!  It is our pleasure to be able to give back to other families and to ISOP!  Oh and don't forget all the profits from the book will be going directly to ISOP! Jenn, Russ, Parents to 2 scoliosis kids - Cole, 4 years, & Max 19 months. 

[Guest guest]

Many many thanks for this book Jenn (and her family).

It arrived yesterday I read it to Johannes this morning for the first time. He

then asked for it to be re-read another THREE times one after another. He

pointed and pointed at the picture of Cole in cast - I don't think he's seen

another child in cast (It made me realise I need to get more pictures!).

I've given a copy to the nursery and they're delighted - they want to help

Johannes to prepare for his first proper casting next week. It's not Mehta

because the consultant isn't Mehta trained, but the frame and cast sound like

yours do complete with holes at the front and back of the cast etc.

It's been a long wait (you may remember that J was treated with bandages that

hardened for months until I requested a second opinion at a different hospital).

Many thanks for your help in looking at alternatives. When J had his

last x-rays (finally got them in February), the consultant said his curves still

hadn't changed so I decided to wait until our appt on March 21st rather than

push to go to the US or whatever.

I am sad that we wasted so much time - but glad that we start proper casting

next week (Wed 21). He will be 22 months and I found his scoliosis at 8 months.

I really wish I'd known then what I know now and pushed to go to a different

hospital earlier. However, his curves have never changed (we've had different

angles given to us because they all read these things differently, but when the

consultants compare the x-rays they say it hasn't progressed). He is still

S-shaped with top curve about 30-36 degrees and bottom curve 26-32 degrees

(depending on who's measuring).

The new consultant said that because his RVAD is less than 20, his curves may be

of the type that resolve on their own(using Mehta's findings). But he said that

at the end of the appt and wasn't proposing 'wait and see' or anything - he's

happy to do the casting. I don't understand why they would suddenly resolve at

this stage if they haven't resolved yet so I'm glad we're doing the casting.

The arrival of the book is very timely to prepare him for next week. It's great

to have a happy ending when talking about his treatment. It makes me feel better

and more hopeful too :-)

Best wishes

Alison

Link to our blog: http://infantilescoliosis-diary.blogspot.com/

>

> I have to give a huge shout out to Jenn and her family for doing such a

> remarkable job on the childrens book! I got mine last Thurs!! The topic

> of a childrens book explaining ET w/ Mehta casting has come up many times

> over the last decade and we're so excited to finally be able to provide

> this to scoli kiddos everywhere. I could have never tackled this on my

> own and if I did, it wouldnt be out for another 5 yrs...And, probably

> wouldnt be as well done! The dedication Jenn and her family (and so many

> others) have given to the ET cause is remarkable and ISOP is so very

> grateful to every single one of you on CAST and every other scoli forum

> that is spreading the word.

> Cole and the Crooked Flower should be in every hospital waiting room

> (ortho & Peds)on the planet. We should also get it to as many schools as

> possible. Please think of everywhere we can circulate it and we'll find a

> way to get it there!

> Also, if theres anyone out there that speaks a language other than english

> and would be willing to translate, please let us know.

> PLEASE, Please share this wonderful book with everyone you know. Heres a

> link to purchase:

>

http://shop.earthycrunchymama.com/collections/recently-added/products/cole-the-c\

rooked-flower

> THANK YOU Leggett family!

> HRH

>

[Guest guest]

Cant believe I forgot to mention THAT!!! ISOP may finally have a constant revenue source to support our programs!! Yay!THANK YOU.HRH From: infantile scoliosis treatment [mailto:infantile scoliosis treatment ] On Behalf Of LeggettSent: Monday, March 12, 2012 2:53 PMinfantile scoliosis treatment Subject: Re: Cole and the Crooked Flower! You are SO SO SO welcome! It is our pleasure to be able to give back to other families and to ISOP! Oh and don't forget all the profits from the book will be going directly to ISOP! Jenn, Russ, Parents to 2 scoliosis kids - Cole, 4 years, & Max 19 months.