3 weeks post surgery...

     The past 3 weeks have been both exhausting, and rewarding. After only about a week after surgery, the tegaderm over her g-tube site started collecting all kinds of gunk, drainage from her stomach, gross. The surgeon had us come in (after I emailed her a picture of said funk) and she took it off 2 days early because it was so nasty. Thank goodness for today's technology. That's when she was able to take her first bath in 12 days! She stayed in there for 2 hours, happily splashing around.

     She wasn't able to tolerate her bolus feeds after a few days, she starting vomiting after each one, so *I* put her on continuous feeds. I told the dr's in the hospital that I felt that was what she needed to be on, my gut told me so, but they dismissed my concerns. Guess what...she's kept everything down since we switched. Her little digestive system just doesn't work the way it should, something I've been saying since she was 3 months old.  I also learned that every time she has any real food, she LOSES weight. Pretty ridiculous, huh? As of now she is on 100% formula until the dr's (or me in my super sleuth-like research skills) can figure out why food does this to her. Why she doesn't absorb the nutrients she should if it isn't already predigested formula.

    We are starting to get into a routine now, I think. I decided that I am going to take a new picture of Willow every day, so we can see the progress. I wish I'd have thought of this 3 weeks ago, but when you're brain is already on overdrive, the best ideas are far from the front of your mind. She is up to 25 lbs 11 oz today, which is almost 3 pounds in only 3 weeks. Astonishing. Everyone told me how happy I would be after the tube was in, and while I definitely didn't believe them at the time, now I see why they were trying to reassure me. I was {this} close to rushing in and stopping the doctor from doing the procedure, now I thank God that I didn't. It was the right thing to do, the right decision to make. Within just a few days of being on the formula we could see a difference in her, in her personality. She has become so much happier, and nearly ALL of her autistic traits have disappeared. They return if she has had an allergen unfortunately, but after the last episode (and the weight loss) that is when I decided NO MORE FOOD, and it has done wonders for her. For whatever reason, food seems to be her enemy, both physically and emotionally. I am praying that her doctors can figure out why this is, until then we will continue on, take everything day by day, and know that God has special plans for this little girl. She is meant to change lives with her story, I just know it.

Look at those cheeks!!