Infantile Scoliosis

So forgive me today but I am going to stand up on my soapbox and use this blog post today to better educate the people in my life and those that may stop by. Why? Well, first off I want family and friends to understand what exactly is happening with Kiya and maybe answer some of their questions or reassure them a little and second maybe just maybe someone will read this and pass along the info to someone else who might share it with someone else, etc. And frankly, I am tired of hearing stories about pediatricians that know NOTHING about infantile scoliosis and the seriousness of it. It has happened to us once and I have heard way to many other stories.

Here is a place with some basic info that answers a lot of questions:

http://www.scoliosis.org/resources/medicalupdates/earlyonset.php

Here is the place I first went to when researching on the internet.

http://www.infantilescoliosis.org/

Because of this website I found a Y.ahoo group for parents with kids with infantile scoliosis. It is because of this group that I met my Chicago sisters that have been beyond welcoming and amazing and I am so fortunate that 2 of them will be at Shriner's with us tomorrow for their children's casts. If you have a moment watch the videos. Kiya will be able to do everything she is already doing and more. This cast will force her to do things a little differently but she can still play, walk, run, jump, etc.

Here are some other good articles.

http://www.medicalnewstoday.com/articles/165856.php

http://nyp.org/enews/cast-correction-iis.html

Thanks to a dear friend that I am so blessed to meet, Catie, we found our way to Shriner's Chicago. I signed up for the Y.ahoo group and posted our story. Within a few hours if that, Catie personally sent me an email and shared TONS of info with me and got me connected with the other Chicago Sisters as they call themselves. I get to meet Catie and Chrissy tomorrow. I have spent a lot of time on the phone with Cara and Sarah has been great to chat with on Facebook and then Amy and Catie send me videos. I am sometimes amazed by the powers of the internet and am so grateful to these amazing women for reaching out to me and showing me the ropes. We all speak the same language and that is a huge comfort.

It is because of these women and others out there that we didn't opt for the wait and see approach. If we had Kiya would not be having this cast done tomorrow but her curve likely would have gotten worse as every expert that has seen her doesn't think it will resolve on its own. We would have sat and waited until the end of October for more x-rays and then maybe a brace. A brace is in our future but braces only hold curves they can't correct them. These casts could in turn with follow up bracing cure her of scoliosis and prevent her from having VERY dangerous and risky spine surgery. We can't say 100% that surgery isn't in her future right now but if we proceeded with the wait and see approach surgery would have been a guarantee no doubt about it.

So we deal with a series of plaster casts that are on 8-12 weeks at a time with a one week break in between for as many as two years (but very likely less). Will it be challenging--yes. Is it doable...yes. Is it necessary...yes.

Stepping off the soapbox