Delaney's Diagnoses

Last Friday, our lives as we knew it..changed. Our little girl was diagnosed with Progressive Infantile Scoliosis (PIS). What a long and dark weekend of research, worry, sadness, defeat and finally hope. After spending an hour writing email after email to update friends and family and then thanking everyone for their prayers, I realized a blog might be a good thing...for 3 reasons. 1. To let everyone know what is going on with Delaney. 2. To document Delaney's journey. 3. Frankly, to have an outlet for our feelings.

So onto Delaney's Story... About a month ago, as she was learning to sit by herself, I thought her back looked funny. One side seemed to stick out farther than the other. Michael and I chalked it up to more muscle on that side from pushing up to sitting. Last Tue night we were giving her a bath and it seemed to be getting worse. So Wed morning I made an appt with her pediatrician. Her doctor said there was definitely something there..maybe even scoliosis. WHOA!! So she referred us to an orthopedic surgeon. Friday we had x-rays and the ortho confirmed the diagnoses. Her spine is curving 40 degrees. I have attached a picture of the x-ray to give you an idea of what it looks like. He recommended a brace to stop the progression and we'd check in 4-6 months. He said, there is no cure. Those are very profound words...no cure.

Well, in our minds, that was unacceptable. This doctor only saw 1 case every few years. While I am sure he is a good ortho, his lack of knowledge on this disease was disturbing. He wanted to just "wait and see" Well if any of you know Michael and I, you know that's not us when it comes to the girls.

So home we went with little knowledge and little hope. Immediately, we took to the internet...looking for anything and everything. We wanted ALL the information. We also made an appt with Cleveland Clinic orthopedics for next tue for a second opinion. But on Friday night we went to bed with little hope. PIS is so rare (1 in 10,000 cases in children) there's not a lot of info. And what we did find was basically what the ortho said...Brace her until she is old enough for a very scary surgery. And even that might not help. Our baby could be deformed or worse..it could crush her organs. Needless to say, we were scared!

Saturday morning, as the girls watched T.V., I was scouring the web and came across a website I had found after the word scoliosis came up at the peds... www.infantilescoliosis.org. It talked about a procedure called "casting" that could CURE scoliosis. I ran upstairs to tell Michael and we began researching. Only a handful of doctors in the U.S. do it. They have been trained by the lady who discovered it herself. In the procedure they put the child under and straighten the spine, then put a plaster cast around their torso.This will "train" the spine to grow straight during this rapid period of growth. They change the cast every 2 months or so until the spine is straight (approx 2 years of casting) It works best before the age of 2. We have found sooo many people that this has helped...and no one that had tried it that it didn't. FINALLY...HOPE!!!!

And as luck would have it, one of the doctors is in Erie, PA at Shriners Hospital. 2 hours from us!! And on top of that, Shriners is a FREE hospital dedicated in helping children in Orthopedics and Burns. But you have to be accepted...and so we wait until Monday....