She lived through the night. They kept a small part of her stomach, but she was still bleeding inside her small intestine. One big bleeder + numerous smalled ones. There are some here who don't know her history so I'm going to tell a bit of it here. THey cut out 9 inches of her intestine when she was 11 months old.
Jadyn was born with an extremely rare vascular disease, when she was diagnosed 3 1/2 years ago she was only 1 of 4 known cases in the world. They believe there may have been as many as 20 worldwide.
Multifocallymphangioendothelomatosis.
Yep, quite a mouthful. What it is that there are MANY lesions throught her body, some show on the outside as a bright red spot, but cause no problems. The ones in her colon and stomach have caused all the problems. They are like small balloons that fill with blood and ruptures causing her to hemorage. Her little heart will beat over 200 times a minute trying desperately to pump blood that isn't there. Her heart rate while sleeping rarely gets under 120. The drs have called the family in at least 12-15 times saying, theres no way she can live, but she has. The drs have even said tat without prayer she would have been dead long ago. She's been a miracle baby. When she's not sick or hurting she loves living. Smiling, laughing, a real ham for the camera. We will be leaving for ILL in the morning, and hopefully get a ride to the hospitol in St Louis from there. She has learned that when certain feelings in her body come along that she will be going to the hospitol again, she will go get her coat and with a sad face say, bye bye. Thats all for now. Charlie.
