Welcome to our Caring Bridge site. It has been created to keep friends and family updated about our loved ones.
My Story is the introduction to our Caring Bridge site.
Be sure to read the latest in the journal, view the photo gallery, and drop us a line in the guestbook.
This site is dedicated to Kirsten and her little brother Aaron. Oh my where do I begin. Kirsten was born along with her identical twin, Emily, in Seattle Wa. December 13 1999. They share a birthday with my sister. We knew at 12 weeks gestation that Kirsten had complicated medical problems. We didn't know how complicated until she was born at 33 wks. She was born without the rectal, urethral, or vaginal openings, no female anatomy, severe cloacal malformation (what should connect to the non existing openings, connected to her bladder instead) only 1 kidney, that is damaged, a damaged non functioning bladder, no sphincter muscles, 2 uteruses and vaginas, lower 3 vertabra fused on the left side, and left foot and leg are shorter than the right. She to date has had in excess of 30 surgeries to fix, create or repair what they can. She relies on a feeding tube, a colostomy bag, and a urinary cathing system. She and her identical twin sister are extra special miracles. They are mono-amniotic twins. That means that the fertilized egg split into twins so late that they shared the same amniotic sac and placenta. They had only a 50% chance of survival because momo twins cords tend to entangle with each other while in utero( theirs were knotted together 3 times). This in turn causes oxygen and blood flow to be cut off, and death. Emily kept Kirsten alive in utero by providing the amniotic fluid Kirsten could not. Kirsten had a kidney transplant (from her Daddy) July 2007.
Aaron has always had difficulty with coordination, both fine and gross motor skills. Then a few months ago when Kirsten and I returned from her having her kidney transplant Aaron's eyes had started crossing and he started having petit mal siezures and short term memory problems and couldn't seem to carry all his thoughts into continuing sentences. So off to Mayo we went. After appointments with neurology and ophthalmology, and scans were done we were told that due to a thickening of the visual cortex layer of his brain on the right side during development, that he has mild Cortical Visual Impairment. The CVI is what is causing his eyes to cross and the memory problems. He is now on anti -seizure meds. and wears an eye patch. As of 2016 Aaron has also been diagnosed with Polymicrogeria and high functioning autism. He no longer needs medication for seizures and does not wear an eye patch.