Thursday, January 14, 2010


I'm feeling completely and utterly overwhelmed. Noah's previously mentioned Shriner's appointment was on Tuesday. Words like life expectancy, brutal surgery, risks, and Hoyer lift are all floating through my head. 

I did learn a lot of things and have so much information in my little head. Some of what I write here is more for me than for you but you get the pleasure of reading it too.....

The doctor that we met with was a familiar doctor. Going in, I wasn't sure which doctor Noah would be assigned to but this was the doctor that performed Noah's heel cord and hip surgery in 2002 so I trust him and he's always very up front and honest. 

Noah was given the official Scoliosis diagnosis. (Big duh to anyone who looks at his back and says he doesn't have it but you always need that official diagnosis.) Noah's curvature is the worst it can be - 96.3 degrees.  I also learned that there is a type of Scoliosis that is associated with Cerebral Palsy and that type of Scoliosis is different from the "normal" type of Scoliosis. All of my research prior to this appointment, the risks associated with Scoliosis, and the little bit of information I had found about the surgery all dealt with the regular Scoliosis. The risks associated with moving forward with the surgery or not having the surgery are completely different when dealing with the Scoliosis associated with CP. 

Children with CP are considered more medically fragile therefore, surgery is harder on their body and this surgery in the doctor's own words is a "brutal surgery" so we need to decide if moving forward with the surgery is worth the risks. In order to help us access that, we'll be meeting with an anthesologist at Shriner's next month to access Noah. The doctor also said that if Noah's life expectancy was not many more years he would not do the surgery due to the possibility of complications like a breathing tube and feeding tube permamently after surgery. 

If Noah has the surgery, we could not pick him up under the armpits for a year. This would require a Hoyer lift. This is where things would get extremely complicated as there is almost no way a Hoyer lift would fit in our house as is and it definitely wouldn't fit in Noah's room. We also have stairs so I have no clue how we'd get him up the stairs. All of that will require some thinking, modifying, and planning but I'm trusting in God that if we do move forward with the surgery he will help us work all these smaller details out.

I know there is more we learned that I'm forgetting. Again, overwhelmed. I keep thinking of more and more questions so I've got a little notebook I always carry with me and I'm writing those down 

In the meantime, we'll be praying (and we're asking family and friends to pray as well) for the strength and guidance to make this decision. As I've always done with Noah's diagnosis and problems in life, I'll be researching and reading as much as I can between now and then. I really want to find a parent who has a child with the type of Scoliosis associated with CP who has had the surgery and one who hasn't had the surgery and talk to them. This doctor is great but over the years I have learned that there are things that other parents can tell you and have experienced that doctors can't or don't tell you.


  1. I'm saying a prayer for you too. And I completely agree about finding parents to talk to. I hope you are able to find someone.

  2. I'm adding you to my prayer list. We should use as blogs as therapy. Get those words out of your head. Write just for you and it help others. We are all so different yet the same. Noah is going to be alright I just feel it. Love and best wishes

  3. Hi Coley,

    Just wanted to let you know that I am praying for you and your family and especially sweet Noah.

    Mary's friend and sewing buddy

  4. Thanks to everyone for the prayers. I can't tell you how comforting it is to know that so many people are praying for my little guy and our family.

    Territory Mom, blogging is absolutely therapy for me!! All day yesterday I kept thinking "I need to write, I need to write." It's just so healing for me and even though it was nearly 11 PM by the time I finally got to sit down at my computer and type out my thoughts, I did feel relief.

  5. Praying here. I wish Noah did not have to go through all this.
    Sorry I have not been a better (undepressed) friend who could give you more support right now.

  6. God bless you Coley! I hope that Noah knows just how wonderful and strong his momma is! Prayers and love going your way...

  7. Coley, you and your sweet little boy are in my thoughts and prayers!! I can't even begin to imagine what you are going through!

    "Cast all your anxiety on him because he cares for you" 1 Peter 5:7

    Love you!!