About 4 years ago I started looking into getting a feeding tube for Rachel as she was not eating or growing right. Rachel is now 6 and struggles with energy, slow growth, and her ability to eat. Lately she has been telling me it hurts to eat. I finally got the courage up to schedule her to get a feeding tube thanks to all of my A-T family that shared their own experiences and the positive results they had experienced once they got their child a feeding tube. Most of them wish they had gotten one sooner. When Rachel found out she was getting a feeding tube she went into her bedroom and made a countdown calendar (this confirmed to me that we had made the right decision and it was a bitter/sweet moment). Rachel was scheduled for surgery last Friday. We drove up Thurs. night and stayed the night. She had a little bit of a runny nose (something that is not unusual for Rachel) and was dancing around at breakfast that morning. We got to Primary Children's hospital where she was admitted for her surgery. She was dressed in her hospital gown and we had visited 2 of the 3 doctors in preparation for her surgery when out of the blue her cheeks went bright red and she spiked a 102 degree fever. It was so disheartening to be so close and then have it all fall apart. With A-T their immune systems can be very fickle and I believe that was likely the cause of the quick change in her health. She is scheduled for surgery again on Feb. 10th. Your faith and prayers in her behalf would be greatly appreciated. Once she has the feeding tube in place she will still be able to eat normal, but we will be able to get her extra calories and nutrition throughout the night that she desperately needs. We will also be able to directly give her medications and supplements through the tube which will be a great blessing to her.
