Yesterday Alex had her swallow study. The goal of the study was to see how her oral motor skills are and to basically see the mechanics of her tongue and swallow coordination. The last study she had was in 2006 and the test took over an hour and was ultimately inconclusive because they could not get her to swallow anything. Yesterday was a total different story - I got to be the one that fed her, the test took about 20 minutes and they were able to record swallow after swallow after swallow. She did great with pudding and honey consistency foods. She did not do well, however, with thin nectar like consistency liquid so at this point it's too dangerous for us to try and work with sucking from a straw with just plain water or juice. She had a really difficult time keeping it in her mouth and the tiny bit that she did swallow started to cross over to her airway, which would mean that she would most likely aspirate. So overall, it was a great study. 
Here she is after the test, happier than ever!
Yesterday we also started back at Children's Hospital's Feeding Clinic. A little discouraging only in the fact that she's not gaining any weight at all. As a matter of fact, she weighs less now than she did a year ago. She's working a lot harder with walking and physical therapy, so I guess I can chalk it up to growth and burning more calories, but still disappointing nonetheless. I really don't want to bulk up her feedings that much more because I still have to be able to lift and carry her, but this is a big concern for the nutritionist. The therapist watched me feed Alex and then did an oral motor test on her, which showed that her swallow is delayed - which I already knew from the swallow study. Obviously Alex's complete physiology is delayed, so I'm not concerned with the delayed swallow - she's eating and although it's delayed, she can eat a cup and a half of her blenderized food in about 15 minutes, so I had to tell the therapist that's not something I'm concerned with, nor is that what I want the focus of her therapy to be. I really want to focus on her learning how to chew so we can can graduate from blenderized food. I also really want to work on her being able to suck from a straw. I'd love to be out and to be able to give her liquids from a cup rather than having to unbuckle her in the wheelchair, hook up her extension tubing and having to give her liquids through a syringe with a multitude of people staring at her. Another topic we discussed was Alex's excessive drooling. I would have thought that with eating she would be able to swallow her secretions better, but it actually got worse and she's probably going through 10-12 bandannas a day. A few years ago we had her on a drug called Robinul to dry up her secretions. It worked great and the drooling was so much less, but it was an injectible drug that we were drawing out of a bottle with a needle and then transferring it to a syringe to administer it through her g-tube. I was really concerned about the long term effects since we weren't using it the way it was supposed to be administered so I stopped it. Yesterday I learned that it now comes in a pill form so I called her pediatrician this morning and we're going to get her started back on that and see if the results are as good as they were in the past. Overall it was a good appointment and I'm anxious to see how she progresses.
Last weekend I took advantage of the long holiday weekend and went to New York with my girlfriend. I was really on the fence about going and felt guilty about leaving the Aaron with the kids for four days. I will never forget about a year and a half after Alex was born my mom and I had taken her to the pediatrician and he took one look at me and asked if I was getting time alone. My mother told him she had offered time and time again to watch Alex and encouraged me to do something by myself, but I just couldn't do it. I thought, how can I go out and enjoy alone time when all I am going to do is worry about her and worrying that no one can care for her and know her needs better than I could. The pediatrician told me that I was not going to be as good of a mom as I could be if I was exhausted all the time and not taking anytime for myself - and that I needed to take a break and come back refreshed and a little less stressed every now and then and that I was actually doing Alex a great disservice. I never forgot that - and although it was hard in the beginning, he was exactly right. I do feel more refreshed when I take a break and come back to the day to day grind thinking, I can do this! So I finally decided to take the trip and I'm so glad I did. I had not been back to my home town in over ten years. I saw and stayed with very dear friends, and I actually reconnected with my childhood best friend. We talked and laughed as if no time had ever passed and are making plans to see each other again in a few weeks.
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