New to the Group

[Guest guest]

Good Morning!

My name is and I just joined this support group following my

daughter Olivia's diagnosis of idiopathic infantile scoliosis. My little one is

15 months old. At 13 months my mother and I noticed that the back of her ribs

felt funny. Her left side protruded out, while her right side was caved in. I

looked it up and found the infantile scoliosis support page. I instantly

panicked and the next day made an appointment with the pediatrician. She noticed

what we noticed and referred us to a specialist at the children's hospital. We

got in there the following week.

The ortho looked at her spine and said " this is usually one of those

things that straighten out on their own, but we'll take an x-ray to check it

out. " We had the x-ray done and after checking it he said " Well I didn't expect

that! I really thought she had maybe a 10 degree curve. She is at a 35 degree

curve and is a perfect candidate for casting. " Having seen the x-ray as it was

being taken, and having done my research, I wasn't surprised. What I wasn't

ready for was what he said next " We're going to schedule an MRI to make sure

there's nothing causing the curve before we proceed. " Now this didn't occur to

me. I hadn't read about cord tethering or brain stem issues. This frightened me.

On Friday we went in for her MRI. This was very stressful as this was the

first time being sedated. The hospital was behind due to emergency procedures so

we were in the prep room for 2 hours before she was taken in. She was a real

trooper when they put her IV in and Mama made sure not to cry until after the

nurses were gone. I couldn't go into the MRI room where she was going to be

sedated because of a previous eye injury I had obtained as a child as a

precaution so my husband went in with her. He read her a story and out she went.

The nurses had to comment about how great my husband is, which they're right!

Olivia was a real trooper and did great with the sedation and came out of it

fine.

The great news is that the scoliosis is officially idiopathic. The MRI

came back clear. What's amazing is how one's perspective changes. I was

initially dreading casting and now I welcome it over the alternative. We are yet

to be scheduled for her cast. I will keep everyone posted on that.

My biggest casting concern is diapering. Olivia drinks like a fish and

her diapers fill fast. She also (sorry TMI coming) saves her bowel movements for

one massive, messy one 9 out of 10 times. I am terrified that she is going to

seriously soil this cast and I'm not going to know what to do with it. Any

advice on this would be greatly appreciated. We are all nervous about the road

ahead, but are doing what we can to prepare ourselves. I truly believe this will

be harder on Mama and Daddy than it will be on her. Any advice would be greatly

appreciated. '

Thank you for taking the time to read our story.