We had a very busy week - six appointments! Because we automatically have three appointments each week (1 OT, 2 craniosacral) it usually happens that at least once a month we will have a crazy week like this. But it was a great week with positive feedback from everyone we saw.
On Monday we saw the feeding therapist. She was really impressed with how well Juliana was eating her baby food (pumpkin). In a nutshell she said that I am doing everything right and agrees that J has come a long way. Hydration/liquid calories are the challenge at this point because J drinks very little. Juliana went over a month where she didn't have anything in her mouth and as a result she forgot/lost her suckling reflex.
Also on Monday we saw the OT. Juliana cried through most of this appointment so we didn't get to work on very much.
On Tuesday we saw the opthamologist. He was pleased with the way her vision has progressed. Her skills are on the rudimentary side but she is improving. I like this doctor very, very much - if you need a ped opthamologist in Atlanta I will be happy to pass along his info.
On Wednesday we saw our craniosacral therapist. He thought that her tone had improved. I don't really know what to think about that, her tone is a weird thing. She has low tone but at the same time she is strong. At any rate, I'll take the positive feedback.
On Thursday we saw the GI. Our GI is another doctor that I like very much. He seems to really care about Juliana and he will spend half an hour with me just to answer my questions. Both those things are a huge, huge deal. He thought that the site of her button looked incredible - although she has very sensitive skin, she has not had any trouble with the area around the button. A lot of people have trouble with granulation tissue but it looks like we won't.
He noticed that she was slipping in the weight charts (which is true and something I've been a bit concerned about) and he wanted to increase the calorie concentration of her formula. However that might not be necessary after all, as we may be having success with a homemade formula... more on that later.
I was really pleased with the visit. He was happy that she was doing well without reflux medications (I think that is pretty huge in the world of tubie kids). He was happy that she liked solid foods and he made a comment that this will be our "saving grace." I told him that I thought that she still reacted to Elecare and he agreed that it sounded like she did. I love it when doctors agree with me!
All in all, Juliana is doing well right now. I know that we're making progress because the things that I worry about are beginning to shift. Initially my number one concern was her gut and her digestive health - after all, how much progress could I expect if she was always in pain? Now I think/hope/pray we're beginning to see improvement there and my concerns are shifting to her spine and her developmental delays. Shifting concerns are a good thing, I think.
I'll close with pictures of my two little munchkins.