With each step forward we take the more sure we are of our decision to cast. Today was our appointment with Yanke Bionics, a company that makes prosthetics and orthotics. And while they do wonderful prosthetics for people who have lost limbs...doing a back brace for a child with scoliosis is, in my opinion, a big waste of time. We left there thinking, how in the world is that supposed to help. I have read so many stories over this last week of families who didn't know about casting and only did the back brace, and so far, I haven't found one family that the brace has completely stopped the progression of scoliosis. Who's children grew up straight and tall without the help of a dangerous surgery, a surgery that often times, doesn't even work.So onto how the process of getting fitted for a brace worked. I wasn't sure what to expect but this wasn't it.
I took pictures to document and to help everyone understand the processes we will be going through. When we got there, we stripped her down to her diaper and they measured her. Just around her body at different levels; collar bone, chest, belly, ect..Then they put this cheese cloth like body suit on her. Now, I have never had a broken bone so I am not familiar with how they 
cast you, but Michael said it was a lot like having an arm or foot cast. They soaked long strips of clothe in plaster and spread it out on the table, then we laid her down on top of that and they laid more strips of plaster all over her. Let me tell ya, she was NOT happy. It was cold and I am sure scary having 3 strange men hold you down. Then they just held the plaster in close to her body until it dried, which took 3 or 4 minutes. Minutes of ear piercing screams and huge crocodile tears. Nothing would console her. She was mad. After it dri
ed, they cut it off of her so they could send the hardened cast and x-rays out to have the brace made. Delaney was covered in plaster, so we had to wash her down before we could dress her to go home. She was worn out and fell asleep immediately..poor girl. So now that part is done, we just wait for the brace which takes about 1 to 2 weeks. Hopefully we just paid for a brace that she won't ever even wear. Hopefully she will be cast before that silly brace even comes in.The part that gets me is they say the brace is to help her sit straight and keep the spine from curving anymore than it already has. But I have read story after story that totally contradicts that. So many children it didn't help. I understand that this is so rare that doctors only know to follow a procedure that is standard, but come on...we found this better alternative treatment with a few clicks of the mouse. Why are doctors to proud to say, let's look into newer better treatments. Let's see if there is anything exciting happening in this area, before they dismiss you with little hope of your child recovering unscathed. How many children have to go through their lives with pain, physical scars, emotional scars, embarrassment, and years of treatments that don't fix the problem. It makes me so sad to think of all those children. The forgotten children. All children with rare and debilitating diseases. We have to do better for them.
It's funny the things you think about. It may sound silly but I keep thinking about how I won't get to hug her squishy little body for almost 2 years without a big hard cast on. Don't get me wrong I am VERY grateful to have this casting opportunity to cure her. But there is nothing like holding your babies warm little body. I keep thinking how sad it is that she won't get to enjoy bath time the way little ones do. Or that this summer, she won't get to play in the pool with her big sister. I'm sure we will be keeping her indoors a lot because the cast will be so hot. Not a lot of outdoor time this year. And then there's what it will do to her skin. I hear it can rub places on her little body raw. And to anyone who has had a cast..well the itching. I just feel bad, and although she won't remember this time, it still breaks my heart. But it's for the best and we will get through it.I've been keeping the heat in our house up and letting her be in just a diaper a lot. She LOVES to be naked (as most babies do). When she is cranky, just take her clothes off and it's like a different baby. I have also been videoing and taking lots of pictures of her like that. Mostly because she has so much fun, especially bath time with Mackenzie. She just splashes and shrieks and is sooo funn
y!Just to give you an idea of just how normal her back looks here is a picture. If you look closely you can just barely see how her left side ribs stick out a bit more than the right. I'm sure this sounds ridiculous, but I keep looking at Mackenzie's spine. Running my hands down it to make sure it is growing straight. (It is, by the way:)Well, I will write more tomorrow as she is getting fitted for her brace. I can't imagine making a mold of a squirmy babies torso. It should be an experience.
As I sit here writing this Delaney is sitting on the floor with only a diaper on. She is talking, talking, talking and there's drool all over her. You would never know this was happening to her. She is always so happy. Unless you know what you are looking for, you would never even know what is going on inside her little body. It was only the fact that we are with her all the time that we just happened to find this..this rare, horrible problem.
On that note, apparently, our first ortho opinion was a little off...okay a lot off. Today we saw a specialist at the Cleveland Clinic. He confirmed that Delaney Cobb angle (the actual curve of the spine) is 40 degrees. But here's the bad part. There is something called a RVAD (rib vertebral angle difference) which is the angle of the rib to the vertebrae. The first doctor (we'll call him Dr. F) said Delaney's was 0. That it looked fine. Fast forward to Dr. K at the Clinic, who measured it at 50 DEGREES!!! Keep in mind anything above 20 degrees is part of the whole progressive diagnoses. So it is a bit worse than we thought. Also, something I thought was odd...the first ortho didn't even touch Delaney, just kind of glanced at her and then looked at the x-ray. Dr. K at CC moved her all around and felt her spine.
Two good things about the appointment was Dr. K was very open to the casting treatment. He highly recommended that if bracing doesn't work in a few months to move on to casting. (however, as I said, we aren't "waiting to see") And 2nd the doctors don't think an MRI is needed because she seems healthy otherwise. (Sometimes they do an MRI to determine if the scoliosis is part of a bigger problem; i.e. cerebral palsy, spina bifida ect..) So THANK GOD this is not part of an even bigger problem. So we are off to Shriners. Can't wait to get this moving.
OHHH...and Miss Delaney pulled herself up to standing today!! It is so funny to see such a tiny little body crawling and standing up:) She is 9 months old now and only weighs 13 lbs..but she is healthy and happy and eats well, we just have really tiny girls.
Michael & I aren't sleeping well, as I am sure you all can imagine. He has stressful dreams and tosses and turns all night while I wake up and start thinking about all of this, and the next thing I know it's dawn. Hopefully after we see some improvement we will be able to relax again. Well, off to feed our happy, naked girl. Thanks again to all the wonderful emails. It really means so much:)
Finally some good news! Michael called Shriners this morning to see if they would accept Delaney. the lady said they weren't accepting anyone until April. Michael explained Delaney's progression and curve degree and she got us in for FEBRUARY 9TH!!!!! WOW!! It seems like things are coming together to help her. Your prayers are working!! We are still going to the Cleveland Clinic tomorrow and to get her fitted for a brace on Friday. But hopefully Shriners and this casting is the answer to our prayers. I'm still trying to figure out this whole blogging thing but I will include some links to the casting procedure and a great article on it. If ya'll want to see what all it involves.
http://www.metacafe.com/watch/945693/mehta_casting/
http://www.urmc.rochester.edu/pr/news/story.cfm?id=1619
Keep praying!! More tomorrow after Cleveland Clinic.
Melody
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....
I took pictures to document and to help everyone understand the processes we will be going through. When we got there, we stripped her down to her diaper and they measured her. Just around her body at different levels; collar bone, chest, belly, ect..Then they put this cheese cloth like body suit on her. Now, I have never had a broken bone so I am not familiar with how they 
cast you, but Michael said it was a lot like having an arm or foot cast. They soaked long strips of clothe in plaster and spread it out on the table, then we laid her down on top of that and they laid more strips of plaster all over her. Let me tell ya, she was NOT happy. It was cold and I am sure scary having 3 strange men hold you down. Then they just held the plaster in close to her body until it dried, which took 3 or 4 minutes. Minutes of ear piercing screams and huge crocodile tears. Nothing would console her. She was mad. After it dri
ed, they cut it off of her so they could send the hardened cast and x-rays out to have the brace made. Delaney was covered in plaster, so we had to wash her down before we could dress her to go home. She was worn out and fell asleep immediately..poor girl. So now that part is done, we just wait for the brace which takes about 1 to 2 weeks. Hopefully we just paid for a brace that she won't ever even wear. Hopefully she will be cast before that silly brace even comes in.
