TrachKids.org

Alaya was born 9/9/08 at 35 weeks gestation, via C-section. Immediately after birth she was intubated and taken to NICU. After about an hour, she was transferred to a level 3 hospital for further care. She was first diagnosed as hypotonic. She had no suck, gag, or swallow. She was very Floppy. After 4 weeks in hospital, I was called in for consultation. I was told that they had no diagnosis for what is wrong with my daughter, all tests came back with no abnormalities, yet she was not improving as fast as they felt she should. I was told that she would not live very long, or that she would not grow much, and that there was nothing they could do to change things. This was all told to me by the attending Neurologist. He did mention getting a Trach and G-Tube but said that I'd only be prolonging the inevitable. Well... I was not going to let him sit there and suggest no medical intervention. I got a second opinion and the 2nd opinion Dr. took one look at me and right away felt that I should be tested for Myasthenia Gravis. Sure enough the results came back positive. It is believed now that's what is the root of Ayaya's condition. Although in babies its transient. By the time Alaya was tested, she tested negative. Low and behold my daughter started to suck on her thumb one day and started moving alot more. So...on October 28, 2008 she was Trached, and G-tube was placed in one surgery. I hated to see her like that, but she started to improve and do the things that they said she wouldn't.  She was transferred to Children's Specialized Hospital on November 5,2008 for a 2 to 3 month stay for rehabilitation and therapy. While there she thrived, she now has a strong gag, suck and she swallows, though not consistently. She is 6 months now and is home as of January 27,2009 she still can't sit up without support, she shows improvement with her neck control she is on a vent setting of 8, which is very low.She's on 1/2 leter of O2 24hrs. We have started the weaning process, she's off the Vent for 4 hours a day,  She is very active and playful and very very vocal. She loves to hear herself, which is amazing considering she has a trach. I pray some day soon we can get her off the vent and decannulated. She is a strong little one with a fighting spirit. AND SHE'S STILL HERE!