Tuesday, May 8, 2012

Iris has a diagnosis and treatment plan!

Iris has been home for almost three months now.  For those of you that don’t already know, Iris is missing her left arm completely and has only a partial right arm with one finger that is bent at a 90° angle.  She also has significant scoliosis.  The scoliosis was a complete surprise to us when we received Iris in China because it was not listed in any of her medical records or background reports.  However, it was obvious to us from the moment we looked at her out of her layers of winter clothing. So, we are baffled as to how this could have been missed. Although Iris is 22 months old, she is not walking yet due to the scoliosis and lack of arms for balance. Instead, she scoots around on her bottom to get around. However, she is such an amazing little girl and can pretty much figure out how to do the majority of the things that she wants to do with the use of her feet and toes, along with her little arm and finger.  She is extremely bright, very positive and happy, and very determined to do things on her own.  As soon as we get her walking, I know that nothing is going to hold her back and that she essentially will be able to do anything she wants to! 

Last week, after three months of waiting, we finally had an appointment with Scottish Rite Hospital to have Iris’s scoliosis and limb differences evaluated.  The doctors said that Iris’s limb differences and scoliosis are due to a condition called ulnar dysplasia.  They said it may have possibly been caused by parental exposure to a teratogen, but the cause is unknown.  Fortunately, the condition is purely musculoskeletal and is not associated with any other conditions. Iris does have one kidney that is slightly smaller than the other, but they said that it should not be anything to worry about unless she begins having recurring bladder infections.

Regarding Iris’s lack of arms and hands, this is not a “big” concern to the doctors because Iris is so incredible with her toes, feet, and partial arm. She is also making an effort to use attachments with her arm to accomplish tasks and may eventually choose to use prostheses. The big concern is with her scoliosis.  Her spine has about a 60° curve and is likely progressing.  If it reaches 80°, it can begin to interfere with her breathing.  The doctors feel that the best course of action will be for Iris to go through a series of casting.  Iris will wear a cast from her shoulders to her hips and will have to be re-cast every two months or so. She will likely be in the casts for 2-3 years or more, after which time she may switch to a brace. The doctors do not feel that the casts will interfere much with her ability to use her toes and feet to accomplish tasks because Iris is so incredibly limber with her legs already. Iris is scheduled to receive her first cast on May 23rd.  She must be anesthetized each time she gets a cast, which makes it a little scary.  After she ireceives her cast, she will not be allowed to swim, play in the water, take tub baths (just sponge baths), and so forth.  This makes me sad because Iris loves the water and will be missing out on these things in her early childhood. However, I know how important it is to correct her condition and how much it will benefit her.  I’m also relieved that she does not require surgery.  Below are some recent photos.  I’ll update after Iris receives her cast and I also plan to post some pics in the near future from our trip to China to get Iris.
Jena loves to dress Iris up.  This was after Jena's "styling" of Iris.

Iris Tinkerbell ready for bedtime

With all my babies

Iris with big sister, Faith, at the "Welcome Home Iris / Jena is a Big Sister" pony party.

Big Sis Jena and Lil Sis Iris. These shirts were a gift from a friend and Jena is so proud to wear it!

Daddy's crazy girls