I am just so thrilled to be a part of this wonderful blog. I love coming here and reading about your experiences and frustrations the triumphs and victories. Why? Because it is here, that I am reminded that I am not alone in my own journey through the streets of Holland. And because just based on what I've read on this blog, I know that you will get me, too. :)
So that you may know me, too, I guess I had better introduce myself. I am hayngrl- as in hawaiian girl. I am a mother of four children; one girl (7 1/2) and three boys (6, 2 1/2, 15 mos). My daughter is Kanani and she will be turning eight this year. She has DiGeorge Syndrome, or 22q11.2 Deletion Syndrome. I am learning to love this disorder. Or so I tell myself frequently!
My pregnancy with Kanani was unremarkable except that she showed some kidney reflux in utero and I was H-U-G-E. People often commented on my large size and asked if I was sure there was just one baby. At thirty-five weeks, I went in for an ultrasound to measure her and see how big she was. The tech indicated that she was six pounds and some-odd ounces. Two days later, I went into labor and she was born at four pounds 14 ounces. I had excess amniotic fluid (polyhydramnios) of more than a gallon. A few hours after her birth, her O2 began to drop, so the nurses took her into the NICU for observation and to suction her out.
What they discovered was that her esophagus was not connected to her stomach and there was a hole in her trachea. As she swallowed her saliva, there was no where for it to go, so it would leak into her lungs. At 24 hours old, she had her first surgery.
Since her birth, Kanani has had countless surgeries and hospitalizations. She was diagnosed with DiGeorge syndrome following her open heart surgery at nine months old. She has an oral aversion, was G-tube fed for most of her life, and is immunodeficient. A few of the hallmark features of her syndrome is that she is language delayed, has learning disabilities, and is at high risk for mental illness.
I am learning how to advocate for children with special needs in the schools. I am learning how to be assertive on her behalf, and am learning how to deal with LIFE in general on a day-to-day basis. And I'm excited to share this journey with all of you!