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Welcome! 
Mieko Jessica
Born: 03/09/04 11:42 a.m. Weight: 4 pounds 10 ounces/ current 27 pounds 9 ounces Length: 17 inches/ current 34 inches Thank you for visiting Mieko's site.
Mieko is a very special little girl who continues to teach us what's important in life. She is truly a gift to us.
Mieko was diagnosed prenatally with a genetic disorder called Trisomy 18. It's the presence of an extra #18 chromosome. She's been diagnosed full Trisomy 18 (extra chromosome through most or all of her cells) In our case, they think it was a random occurrence. At the age of three, Mieko is already considered a long term survivor. Research shows only 10 percent of Trisomy 18 children live beyond the first year. However, there are some children who have lived much longer. Defects and issues can vary widely.
In Mieko's case, the disorder manifested in two heart defects. A duct above her heart that didn't close after birth (PDA corrected with surgery on 3/18/04) and a hole between the bottom chambers of her heart (ventricular septal defect corrected 8/04/04). She had open heart surgery at Children's Hospital Minneapolis. She has a history of pulmonary hypertension and other respiratory problems. Mieko has also suffered seizures causing apnea in the past. Mieko has Dandy Walker cysts in the brain and underdevelopment in the area that bridges between the left and right sides of the brain. She has growth, feeding, and development issues as well. Mieko uses oxygen at night for obstructive apnea, but usually does not need it while awake unless she is ill. Mieko is fed through a gastrostomy/jejunostomy tube. At this time she can't eat by mouth safely. Difficulty swallowing has led to severe respiratory problems, so we are taking a break. She does drink water out of a sippy cup. Gastroesophageal reflux continues to be a problem for her. She has a moderate hearing loss and wears hearing aids. Mieko also has scoliosis and now wears a back brace (TLSO) to slow the progression. She will likely need surgery to correct this curvature in the future. Mieko also wears a hewson brace at night for subluxation of the hips (hips are slightly out of place in the socket). So far, the brace is helping and her hip placement is improving.
She's developing at her own pace and receives physical therapy and special education through the St. Paul public school system. Mieko takes steps with a walker and we're hopeful she will eventually walk on her own. She can sit up on her own and roll. She doesn't crawl, but she can get up on her hands and knees. She loves to play with her hands and manipulates objects very well. Mieko is also in pool therapy to supplement her regular physical therapy. She has personal care attendants who help take care of her at home. We're very thankful for all of the friends, family, and medical professionals at Children's Hospitals in St. Paul and Minneapolis and Gillette Hospital who continue to do so much for Mieko. To learn more about Trisomy disorders, go to www.trisomy.org
Journal
Sunday, October 28, 2007 11:31 AM CDT Mieko's CaringBridge website has moved!
Please go to :
www.caringbridge.org/visit/mieko
There are more photos and you can sign up for notification when there's a new entry. Thanks for visiting!
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