two_sparrows
TrachKid Profile
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Anja was born on April 4th, 2009 in Okinawa, Japan. My pregnancy was uneventful and there were no indications of her condition prior to birth. Upon birth, she was not breathing and had many signs of a genetic disorder, such as abnormally formed ears, hypotonia, rocker-bottom feet, hip dysplasia and tracheomalacia. The Okinawa hospital wasn't equipped with the various pediatric specialists she needed, so our family was medically evacuated to Honolulu, Hawaii. She spent over 80 days in the NICU and another 20 in the PICU. She was discharged from the hospital on 1/8 liter of oxygen via nasal canula. Two months later, we moved to Texas and shortly after our arrival, she was back in the hospital and intubated. She previously had tracheomalcia and a paralyzed vocal cord, but her airway is no longer floppy and she has regained mobility of the vocal cord.
The trach was placed on October 30th, 2009 and Anja was finally able to come home a week before Christmas. She has thrived with the trach, although she is still vent-dependant. Her vent settings are low and she does great on CPAP trials, so we are hopeful she will out-grow the vent someday!
At first the geneticsts working on her case believed she has Larsen's Syndrome, but she tested negative for it. While she was in the hospital, we had several neuro-muscular tests done, but all returned normal. Sometime in November, the MPS strand was found in her urine and we were told she probably has Hurler's Syndrome. Weeks later, that test returned normal as well. They then sent out testing for other MPS-related diseases and ALL came back normal. :)
In Hawaii, her feet were casted for 9 weeks to help correct their position, but she will still require surgery on them. She was put in a harness at one point for the dislocated hips, however her dislocations are too severe to be helped by the harness alone and she will undergo surgery for this in April 2010. She will be in a spica cast following the surgery.
Anja receives PT, OT and ST at home. She does very well with this and although she is delayed, she is making huge strides! Her head control and hand-coordination is significantly improving. She makes quite a bit of noise despite the trach and "talks" to us all the time, and we are actively teaching her sign language, although she seems to understand a few sign she has yet to attempt signing anything back.
History
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- Member for
- 2 years 17 weeks
Location
- Country
- United States
- State/Province
- Texas
