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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
Friday, September 19, 2008 5:38 PM CDT Mieko passed away July 11,2008 due to complications of pulmonary hypertension. She accomplished a great deal in her four and a half years and continues to inspire us.
This is her old caring bridge site, which contains more than three years of her journal entries. We will keep this site up as long as possible as well as her newer caring bridge site at:
www.caringbridge.org/visit/mieko
We hope this information may help other families dealing with trisomy 18 diagnoses. Please feel free to contact us at anytime.
You can also find videos and slideshows of Mieko on her youtube channel:
http://youtube.com/trisomyvoices
Thank you for visiting.
Here's a copy of Mieko's obituary:
Mieko Jessica Johnson
Johnson, Mieko Jessica Age 4, of St. Paul, on July 11, 2008. Mieko was truly a special little girl who touched many people during her short but full life. She was born with Trisomy 18, a severe genetic disorder. She had many medical and developmental challenges, but far exceeded expectations. Mieko just finished her first year of pre-school at Rondo School in St. Paul. She loved school and the other children and staff. Mieko enjoyed walking with her walker, triking, swinging, art, music time, and playing with everyone. But most of all, she loved people and always smiled and connected with them. She made everyone she met feel special. We are forever grateful to the teachers, aides, and therapists at St. Paul schools who cared so much about her since she was just a few months old. Mieko was able to accomplish more than we ever imagined due to the dedication of all the medical professionals at Children's Hospitals and Clinics Minnesota and Gillette Specialty Care. Children's Heart Clinic repaired a hole in her heart when she was five months old, which enabled her to live an active life for almost four more years. This special girl brought so much love to her parents Shawn Johnson and Maya Nishikawa and the rest of her family. We cherished every milestone as well as the everyday pleasures like going for walks, swinging in the park, snuggling while watching t.v., and petting kitties. What may be ordinary to some families, was extraordinary for Mieko's family and others who have children with disabilities like Trisomy 18. Mieko inspired many other families who were told there was no hope of quality of life for a Trisomy 18 child. She had a joyful life and brought love and happiness to all those around her. Mieko, Mommy and Daddy are so proud of you. You gave us so much and we were blessed to be with you these past four years. Your beautiful loving spirit will always be with us. You made us better people. We know you fought to be with us longer, but we look forward to the day we will be together again. You will be missed by your Grandpa and Grandma and many aunts, uncles, cousins and beloved friends. We love you Little Kitty. Public viewing at Willwerscheid Funeral Home, 1167 Grand Ave, St. Paul, 651-228-1006 Monday July 14th 10 a.m. Celebration Service to follow at 11 a.m. Please wear bright and cheerful colors in honor of Mieko's happy spirit.
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