Moving Along

The past 2 days have been pretty quiet. She was awake most of the day yesterday and awake all day today. They put her in a therapy chair and strapped her in for a few hours yesterday and the same thing twice today. She seems to like it and it helps build her upper body strength which she needs badly especially in her head. She held her head a little better today than she did yesterday. She will probably stay on antibiotics for a total of 14 days. We are waiting to hear from gastro about whether they want her to always have a low dose of antibiotic to keep bacteria down which will help keep the gas down. They think the reason she got all the gas was that the bacteria built up from the stomach not moving things through well. The pediatric resident seemed to think they may try low dose of antibiotic with tube feeds to see if that allows her to tolerate the feeds. We are praying that is what happens. Otherwise they may never let her eat or tube feed again and only do the nutrition through veins. I hope that does not happen since that will be so hard on her to not be able to eat after 9 years of eating. They siad today nobody really knows what they will do yet though- basically day by day.