It's been a year!

One year ago today Delaney was diagnosed...worst day of my life! Sorry I haven't updated. My apologies to everyone. I guess maybe it is a good thing I haven't written. No news is good news, right?

Last June, Delaney was officially taken out of the cast and fitted for a brace. Her curve was "unmeasurable" meaning it was below 10 degrees. They still had to put her under to get the mold for the brace. After the "surgery" we took the mold down the street where they made her new brace. After it was made and fitted to her, we headed back to Shriner's so they could x-ray her and make sure the brace was holding her spine straight. It was holding perfectly but it was rubbing her in some spots, so back to Prosthetics for some tweaking...whew, what a LONG day! Her brace looks just as uncomfortable as the body cast..very tight! It's very "fashionable" for a brace..LOL! It has pink & purple butterflies all over it. While she can't appreciate that right now, Mackenzie sure does:) Here she is in her new brace...

Clearly, we still have the same diapering issues...her little crack is always hanging out:) Our biggest concern is that she hardly eats...I'm guessing because the brace is so tight. She is supposed to wear it 23 hours a day...but on special occasions we have let her out for a day. She always eats so much better with it off. At 22 months she weighs a mere 18lbs 14 oz, but she has been better lately so we are hoping she will start growing soon!

I promise to keep updating. We have an appt with Shriner's on Feb 19th and I'm betting she will need to get a new brace as she is finally growing out of this one. But almost daily I am running my fingers up her spine and so far...still feels straight!! Thank you all for your prayers..it worked!

X-rays speak a thousand words.

I remember the exact moment I saw Delaney's first x-ray. It is devastating to see it there in black and white. To see what is happening inside our babies tiny body. Thank goodness Michael was with me because once they put that x-ray up on the board I couldn't hear anything the doctor said. I just stood there, tears streaming down my face, staring at that horrible image. The other parents of children with PIS all say the same thing...that first x-ray is engraved on our minds and remains a prick in our hearts forever.








X-rays are kind of like our life line through this. We wait anxiously for each x-ray. It's thrilling and scary at the same time, waiting to see how much progress has been made. We have been lucky and our journey has been significantly shorter than most. And while we still have a long road ahead with bracing and more x-rays, the worst is over, Delaney's spine responded to the casting and she will be cured.

I ordered copies of her last x-ray (April 22th, 2nd casting), we recently received them in the mail and I would like to show her progress. The x-ray at the top is a copy of her first x-ray, at that time they had her at 45 degree curve. (after taken properly at Shriner's, she was actually at 23 degree curve). The picture below on the left is an x-ray of her OUT of her 1st cast before they applied the second one. Her COBB angle was down from 23 degrees to 14 degrees. What a difference!! The picture on the right is an x-ray of her IN the 2nd cast. They got her spine down to ZERO! Just look at that beautiful straight spine!! They consider anything below 10 degrees cured..as most people have some curve to their spine...so they believe this 2nd cast is the final!! Can't wait to see her new x-ray next week and see what her new curve will be. Compared to that first heart wrenching x-ray...that one on the left looks pretty good to me:) Wish us luck next week...pray for wonderful results!!

National Scoliosis Month!

Infantile Scoliosis affects children under the age of 3. If you have a child under 3 or know someone who does, I strongly encourage you to inform them of this disease. It's not something the pediatrician routinely looks for at their well visits. It is not something parents readily know about. Before I had the girls, I read every book I could get my hands on about babies...I read about their milestones, their growth rate, diaper rash, dressing them for cold, childhood illnesses, what happens at their doctors appts, etc. Not ONCE did I ever read the word Scoliosis. Not once did the pediatrician look at my girls spines. Yet all it takes is a glance or a quick feel down the spine for a doctor to see something is wrong. As a parent, you have no idea this problem lurks around the corner, no one warns you about this disease. When we first noticed Delaney's back looked funny, we thought it was because she was learning to sit up. We thought she just had more muscle on that side. We were wrong. So in honor of National Scoliosis Month, tell everyone you know to check their kids spines. And then check them again EVERY month. This is a very progressive disease, and if caught early can be CURED!