Sunday, March 10, 2013

Trisomy 10

Trisomy 10 Awareness Day, featuring Kira, with Trisomy 10P! 

Kira was diagnosed with Trisomy 10p two weeks after she was born. She had some breathing difficulties at first but the real issue was her feeding, she was tiny 5lbs 9oz and was born full term. She got transferred to a children's hospital and that's where she got a G-tube and a Nissen Fundoplication because she refluxed almost everything she took in. She barely passed her hearing test and her eyes where fine at the time. We were able to go home after 2 months and had therapies lined up for her at home. Her development was slow and didn't start sitting until 15 months old and hated being on her tummy because of the G-tube.

At a 1 1/2 years old she had a Diaphragmatic Hernia Repair and a Re-do Fundoplication. She also had strabismus surgery to fix crossed eyes and began wearing glasses for farsightedness. She also was diagnosed with mild-moderate hearing loss and began wearing hearing aids. She had her first possible seizure when she was 2 years old but till now has not been diagnosed with a seizure disorder but she is borderline. She had a diaphragmatic plication also when she was 2 and when she was 3 she had a really bad bowel obstruction that resulted in another perforation of the diaphragm and the colon went up the lungs. She had to have a temporary colostomy for her colon to heal and a year after the colostomy was taken down.

During the surgery she had a stroke and that resulted the left of her body to be weaker than her right. It is very mild now but her hip did get partially out of the socket because of the weakness in her muscle that holds it together. She is scheduled to have surgery this March and will be on a body cast for 6 weeks. She has had numerous hospital stays for pneumonia, infections and possible seizures but all of that does not take her smile away. She is an extremely happy girl even with her being nonverbal she definitely communicates. She can walk assisted and scoots on her bottom to get around. We have been working on oral feeds for quit a long time but she is so overly oral aversive that she does not cooperate. She has a younger sister that she loves and yes she will fight with her if she takes away her book. She loves books!!

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