Is it what you thought?

I know that it is difficult to imagine what Delaney's cast looks like. When people see her in it they either think it's much better than they imagined or much worse. So I thought I would post some pictures of it to help show exactly what it looks like and explain why it looks the way it does. Before they actually apply the cast they put a tank top like shirt on her. The shirt is antimicrobial, which means it inhibits the growth of bacteria, fungi, and viruses. So it helps keep her skin under the cast dry and healthy. Delaney's cast is under the arms, although some can be over the arms or over just one arm depending on the child's curve. It comes all the way down to her pubic bone in the front and the tail bone in the back. Which makes diapering a huge problem. We have to change her much more during the day and each diaper has to be tucked up into the cast. We have already had a couple of leaks...which means we have to pull the t-shirt as far down at the bottom as we can and hand wash it. Then blow it dry. The t-shirt can not be removed so it is already looking a little worn. At night, because she sleeps through the night, we have to have extra protection. We take an overnight maxi pad (recommended by Shriner's) cut in half, we place one half in the diaper and one half sideways at the top of the diaper in back. Then tuck in the pad as far as we can into the cast, pull the diaper up over the cast and tape it in place. So far this method seems to be working.

Back to how the cast looks. The front of the cast is cut out to allow room for her tummy and her ribs so she doesn't develop a chest wall deformity. They also cut a hole in the right side of the back of the cast. Because her curve is to the left, the cast pushes on the left side of her body to straighten it out. So the hole in the right side is to allow room for the ribs to grow to the right. Obviously, you still see the t-shirt under the holes in the cast. As you can see we chose a pink cast for her although not much pink shows. They apply waterproof tape along the bottom of the cast and over the section under her chin to help keep the cast dry. The nurses apply the moleskin petals, which are brown, all around the edges of the cast to make it softer and to help keep it dry. Shriner's gave us extra petals and tape so that we could change out the old as needed. Delaney's cast weighs about 2-1/2 pounds which is about 20% of her body weight, so moving around was difficult at first. But about 6 days later she was back to doing all the things she's always done at the same speed. The hardest thing was probably sitting up. The cast looks very uncomfortable but she has adjusted very well.

I truly feel terrible for the families that have to go through this for long periods of time. It is quite an adjustment. There are so many little things to think about. Diapering, bigger clothes, keeping her cool, keeping her dry etc.. Not to mention watching them struggle to do everyday activities that were so easy for them before. But children are resilient and so strong. Luckily she will not even remember this time, even though I always will.

Part 2: Delaney's 1st cast

Shriner's is the most amazing hospital I have ever been to. Of course I have been to other children's hospitals and they are great, but Shriner's really goes above and beyond. They took such good care of us. They completely made us comfortable. Every single person there acted like Delaney was the only child in the world. They know how stressful and heart wrenching it is to have your child go through something like this. I just can not say enough about that place.
And the fact that it is free...free so that no child is left behind, no matter their family's circumstance.


So back to Miss Delaney...as we walked through the Recovery Room doors, there she was, the most beautiful baby in the world...screaming her tiny head off. There were 4 nurses around her. Two monitoring her vitals and 2 just trying to comfort her. And covering her body was the horrible cast. The horrible cast that was also the most wonderful thing in the world to us, as it would fix our baby. She still had her IV in and she looked very disoriented. They said crying is good for them right after anesthesia, it gets all the gunk out of their lungs. So I just held her and let her cry. She also received a "surgery present" which was a Raggedy Ann Doll. Of course at that moment she could not care less. The doctor came in at that point and he told us the most wonderful news! He got her spinal curve down from 23 degrees to 10 degrees in the cast! Best of all, she may only need 1 more cast! WOW how far we have come in these 6 weeks.

Delaney was doing so well they sent us up to our room, where I was allowed to breast feed her. As soon as she ate, she was her old self...laughing at Daddy and

watching Dora on T.V. Since she didn't get sick, they came in and removed her I.V., took her temp etc.. She was doing amazingly well. It truly could not have gone better. On a side note, nurses are aloud to give out "treasure chest passes" to kids so they can go to the playroom and take a toy out of the treasure chest. We had 3 nurses each give her separate passes, telling us how brave and strong she was. They were always so encouraging and absolutely wonderful with the children.

Unfortunately, it wasn't over though. A nurse still had to come in and trim and petal the cast. The bottom of the cast comes down to her pubic bone in the front and her tail bone in the back, so they have to cut out sections around the legs so she can sit up right. Also, under the arms was to tight so they trimmed that as well. So we had to hold her down while they trimmed. I have never seen her so mad. I am sure it scared her as it was vibrating the whole cast and it was loud. We also had to hold a blanket in front of her face so the shavings wouldn't get in her eyes. So I am sure she was terrified! Then they do something called "petaling". It's small pieces of flower petal shaped moleskin with adhesive on the back that the nurse put all around the edges of the cast. It helps keep the cast from rubbing her skin raw. We were shown how to change the petals and how to keep the cast clean and dry.

By this time, our dear little Delaney was exhausted! Luckily she had done well enough that they thought we could go home. It was only 1:45 but felt like 8:00 at night. What a long day! We signed all the paperwork, got our next casting date and headed home with our sleeping beauty in the backseat.

Part 1: Delaney's 1st casting

I know there are some people following the blog who have children with PIS. Some a step or two behind us in our journey, so I will write in some detail about our experience with the first cast. So to begin, our appointment was set for 6:00 a.m. at Shriner's Hospital. Because we are 2 hours from there we stayed the night before in a hotel down the street. Delaney wasn't allowed to eat or drink for 8 hours, although I could breast feed her up to 4 hours before. So I did wake her up at 2:00 a.m. so she wouldn't starve.

When we arrived we were immediately put in our own room and 2 nurses wheeled in 2 computers and started firing questions at us. All the while making us very comfortable. They were amazing with Delaney, offered us drinks, told lots of stories...it was all very calming, considering the circumstance. We were given a pager so they could page us when it was over or if they needed us. Then we undressed Delaney and they took all her vitals (height, weight, head circumference etc..) A nurse brought in the tiniest hospital gown I have ever seen and we put that on her. She looked so small and sweet (see pic).

We were then moved to pre-op where Delaney started to get fussy...she was so hungry and tired. Such a long morning for a baby. In pre-op the 5 people who were her "team" came in individually and discussed their role and what would happen in the operating room. Then a mean nurse (who was actually the nicest nurse I have ever met, but she wanted to take my baby) came and walked us to the Operating Room doors, where we hugged Delaney's soft, warm body and handed her off.

They had told us it would be about an hour, so we headed down to the cafeteria for some coffee and then back to the parents waiting room (which was just across the hall from the o.r.) Maybe 10 minutes later the nurse who was with Delaney all the way through called us from surgery to tell us she went down quickly and they were already casting...she was doing well.
It was amazing how fast it went, maybe 20-30 minutes later they called us again and said we could go into recovery..Delaney was casted and awake.

To be continued...

Light at the end...

Because I am short on time right now, I just want to give a quick update for all you wonderful people who are following our story. I believe the reason for all of our blessings is the amount of prayers from our amazing friends, family, and even strangers. I will write in detail the process and everything we went through yesterday, but today I will just let you in to our fantastic news. Delaney did amazingly well getting her first cast. Everything went VERY smoothly with her being put under. She did not vomit or get sick in any way. She was a trooper...and is insanely strong! I am so proud of her. The doctors got her curve from 23 degrees down to 10 degrees in the cast. That is amazing!!! But the VERY best part of it all is that they think she may only need 1 more cast!!!!!! That would mean she would only have to be in it for 4 months instead of 1 year. She is very flexible and they were impressed with the amount of correction they got in her first cast, so the doctors are EXTREMELY encouraged. Everything went very fast and so much better than we expected. Her surgery started at 7:45 and we were in our own room by 9:15. Then they released us at 1:45. She just did so well...we are so blessed! The cast weighs about 3 lbs so it is very heavy for her. But she even did much better with adjusting than we could have hoped. When we got home she could still crawl and pull up to standing. Sitting is harder and she falls over a lot. She gets SO mad that she has to support the cast and everything she does is much slower. She has always been very active, so she does cry out in frustration...but she will be back to her old mischievous self very soon. We could not have imagined such success!! It is all because of your prayers!! Thank you all soo much from the bottom of our hearts!

Our special little girl

We leave tomorrow for Shriner's. Delaney's appointment is at 6:00 a.m. on Wednesday. And while I am excited to get this process started, I am also a nervous wreck! But I am not going to talk about all the bad stuff right now. I am sure there will be plenty of ups and down to come. So today I just want to focus on my sweet little girl. So I am posting a few recent pictures of her. Pictures that make me smile. While these last few weeks have been very stressful and heartbreaking, it has also been a wonderful time. Delaney is at the stage where every day brings about something new. Everyday she explores new places, gets a new tooth, laughs at something funny, or melts my heart with her beautiful grin. Delaney is very laid back and VERY sweet, always full of loveliness. Her face is almost angelic, with it's tiny features and eyes full of innocence. She has been such a pleasant, sweet, enjoyable baby and I feel truly blessed to have her. So before this hard road really begins I am sharing some of her with you....


Miss Hollywood!! Just chillin!


Trying to take her sister baby in the bath. Loving bath time!!