Despair Not

What a difficult two weeks we've had... But thankfully Anna has had a small turn-around, where she's been drinking better bottles and has expressed some desire to eat again. Over the weekend, I made a yummy soup with cabbage, green beans, carrots, zucchini, onion, garlic, and a few other goodies in beef broth, then added tomato paste and shredded chicken. It was pretty delish, and it never gets old watching Gabe try it and then getting his "stamp of approval." I never realized how much I missed getting it from Anna, since she can't eat anything I make anymore... I used to puree dinners for her but after stupid Rett started to set in, she couldn't swallow it anymore. So now she really just eats high-fat yogurt, or Boost, maybe applesauce on a good day, cereal with hemp milk, and Vital Jr.

Imagine my surprise when she expressed a huge interest in the soup the other night! The tomato paste thickened the broth enough where she could swallow a few bites (without any of the veggies and chicken of course, but the taste of it all was in there!) and she loved it. It was awesome! She had quite a few bites before she couldn't eat anymore, but it warmed my heart! She liked her mama's soup!

After that, Manny looked at me and said, "I can expect we will be having A LOT of that this winter, yes?"

Yes!

I've been on the phone with a few of her doc's this weekend, and we are going to try a few different things before we finalize a trip to Boston or surgery. One option is switching her tube feeds to a probiotic formula. We are going to see if this helps with the vomiting and congestion. As far as oral feeds go right now, we've basically suspended any lean meat, veggie or fruit in favor of ultra high-fat and high-cal foods, and we are going to be super aggressive about every calorie and gram of fat going in. We went from 2 bottles of Vital Jr. (high-fat, high-cal, lactose/gluten free nutritional supplement) and 3 meals a day to 3 - 3 1/2 bottles and 1 meal that's usually in the morning to keep her eating somewhat. We don't want her to lose the ability to eat... Plus, she enjoys it... But she needs the fat and cals from the formula right now. We've seen a big increase in her teeth grinding because of it... She's pissed we aren't feeding her as much food, but she desperately needs to get weight on. Such a Catch 22.

I hooked her up to the feeding pump today for about 2 hours, and mixed Carnation instant breakfast into the Vital Jr. for some extra calories... She seemed to tolerate okay until she started yelling at me. She hates being hooked up to the feeding pump!

While we "wait and see" how this week goes, and hope and pray Anna chunks up and keeps food in, we are going about life as usual and staying positive. This morning I could have stayed in bed all day... I was nervous about all of the "what if's" and asked myself, "how many more 'bad' Rett days can I - can we as a family - handle?" But the amazing amount of support, love, and prayers coming our way is so comforting.

One of my favorite quotes from my favorite book/movie, Anne of Green Gables, is at the front of my mind when times get tough and I hurt so much for Anna. Anne Shirley asked Marilla, "Can't you even imagine you're in the depths of despair?" Marilla curtly replied, "No I cannot. To despair is to turn your back on God."