Thursday, April 19, 2012

A blog to understand it all!

This past month or so, has been nothing but an emotional roller coaster! We really appreciate every one's concerns, support, prayers and thoughts toward us and especially for Kaylie. Many of you are having a hard time understanding what's going on, or are confused about Kaylie’s situation. So here is a load of info, if your interested! We have created this blog to keep family, friends and new friends to come, updated on Kaylie's condition and the awareness that is needed to understand Chiari 1 Malformation. We have had so many inquire, "Are they sure?", "Could it really be this...", It sound a lot like this illness/mental condition/disease". Yes!, No! & No! Yes, they know for sure she has it... it was on an MRI. Chiari is literally a malformation of the brain. Malformation means: irregular, anomalous, abnormal, or faulty formation or structure. It is a physical condition, that is causing her symptoms. She was most likely born this way. Meaning that when she was born her skull bones were born a little to small, and as she has grown these five years, her brain has caught up to her skull (b/c your skull grows faster than your brain) and it has run out of room, so it has started to protrude downwards in the foramen magnum (the hole your spinal cord goes down). I am not going to go into any more explanation of it... at the top of this blog under: "About Kaylie" and/or "What is Chiari?" you can read more about it all and that info will always be on here.
Like I said before, this blog is to keep all up to date on her. We will probably be talking about how the other four members of our family are handling this, time to time. Me (Amber, Kaylie's mom) will probably a lot! 
I hope you find this blog useful... maybe interesting, and spread it around! More people need to be aware of this invisible illness. Kaylie looks "perfect" on the outside... and believe me, she is to me... in every way, but she has a serious condition. So, Follow us, Comment to us, Facebook us, Tweet us, Email us.... spread the word!

1 comment:

  1. I will pray for your sweet little girl and your family. I will also spread this blog all over. Sending positive thoughts, support and love from New York, Beth