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OI CHILD

Kayte's OI Story

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OI Children are like snowflakes-----no two are just alike.

I feel privileged to be a part of a unique group of people. The  OI community as a whole. I would not have chosen for Kayte to have this life changing disease. However, I truly do feel blessed that God hand picked me to be Kayte's mom partner on this journey of life.
 
My OI experience began a little over four years ago. My daughter, Kayte Marie, was born on May 27th, 2001. My husband, Roger, and I have a biological son, Landon. He is now 16 years old. We had many complications with his birth. He was at Riley Children's Hospital for the first eight months on his life. By the grace of God he is perfect now, only suffering from mild CP. We were contacted in March of 2001 and asked if we would be interested in adopting a child that was due in June. We discussed it and decided to decline the offer. We were in the process of adopting a family of three children that had been in our home for over two years. With our then 12 year old son, we were full and running over.
I assisted this mother (very unstable mentally, actively addicted to drugs and alcohol) in securing another family for her child. On a Saturday she went into labor. They called and asked me to come to the hospital. Shortly after arriving a phone call came in, the adoptive family backed out because of the projected low birth weight of the child. Kayte was born ten hours later. Her heart rate began to drop so they took her be emergency c-section. (A BLESSING IN DISGUISE)  They immediately took kayte by ambulance to Riley Children's Hospital about 1.5 hours away. I followed behind the ambulance. Many of our family members and friends met us at Riley. We were all kept in the lobby area while they got this baby settled in. At this point I am thinking with my brain, I will take this baby home, and love her until another adoptive home can be found. RIGHT!!!!
I prayed with my Pastor before going up to see Kayte for the first time, I asked God to give me a clear cut sign if we were suppose to adopt this little girl. (let me just say my husband and son wanted to keep this baby, I was the only hold out)... As the doctor led us to Kayte's bed side, I kept having flash back memories of Landon being at Riley. When we got off the elevator I couldn't
believe it was on the same floor that Landon spent all of that time on. I will skip to the punch line, Kayte was on the same floor, the same ICU unit, and the same bed space that Landon spent his first 8 months of life. (this is a very big hospital) As I stood over her bed looking at her tiny 3.5 pound body I began to cry...She looked sort of mangled. Her legs weren't straight, her left arm twisted, and she looked like she was in pain. A nurse tapped me on the shoulder and said, "Landon's mom...." Kayte's nurse had been our son's primary nurse during his stay 12 years prior. She hadn't worked in this unit for over ten years... She was filling in that weekend only. OKAY GOD, OKAY GOD.... I get it!
 
The doctors then began overwhelming me with medical terms about our daughter...Osteo Genesis Imperfecta.... I know Osteo meant Bones.... Genesis was the first book in the Bible, Imperfecta surely meant not perfect... I was lost. But I knew I had to take charge to get this baby help. I went to the Internet that day and printed off 213 pages of stuff. I still have this in her file. I asked to talk to an Ortho doc, they sent me a student. LOL I told them I wanted to talk to a doctor that had treated at least ten OI patients. Finally a doctor came up, Dr. Kayes. (if you notice his name is spelled similar to Kaytes... We named her after meeting him. :) He said to us, "the doctors really think your daughter has type II OI. Most children do not live with type II. It is your call, but I don't think I would put her through trying to straighten her bones, just make her comfortable." I quickly replied, "God gave me this baby to raise not to make comfortable. I want her bones fixed!. So he did. And he did it wonderfully. He then said, "there is some EXPERIMENTAL medicine called Pamidronate that might help, do you
want me to send a endocrinologist up to talk to you..." Just a few days old she received her first infusion.
When I show people kaytes pictures before he worked on her they can't believe how straight she is now. He counted over 30 in utero fractures on full body x-rays.
Then on day 12, as we were preparing to take her home a nurse did a blood pressure on her right femur when I left the room to go eat. Of course it fractured. We brought her home two days later.
The children I mentioned earlier that had been with us for so long, left us three months later. This was a devastating surprise. But then I could see God's plan more clearly.
 
Kayte received pamidronate for two years. We are just getting ready to start very small doses again. We have had her in swim therapy three times per week since she was one month old. She is 4 years old, she met all of her developmental milestones appropriately. She is beautiful inside and out. She brings sunshine to everyone she comes in contact with.
 
Kayte has been seen at NIH in Bethesda Maryland, since she was a year old. We do not follow their protocol. However we are a unique case. She maps out differently than most. Kayte did have a skin biopsy done, she typed out as Type III/IV but presented like a type III. I personally feel like the use of pamidronate has made her present more like a mild type IV. However, she is very short in stature and has very blue scleras.

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