Monday, February 16, 2015

I love you from the heart.

A little over a month ago Owen, out of the blue, came up to me and said, 'momma, I love you from the heart'. And I melted. I don't know where he heard this, or if it came from him but it is the new saying around our house and I love it.


Things are pretty status quo in our house these days. We go about our weeks with a pretty predictable schedule, throwing in the occasional therapy or dr appointment here and there but otherwise keeping to a pretty standard day to day routine. Claire still gets tube feeds at 5, 9, 1, 5, and 9 with attempts at oral feeding scattered throughout the day. We are working on transitioning her to a more Blendarized diet in place of the commercially prepared 'pediatric compleat' formula that we are currently giving her. She continues to make very slow and steady advances in oral eating as her reflux improves and she gets more trusting with foods and favors. It has now been almost exactly a year since she had her G tube placed and although I had hoped that she wouldn't still have it at this point I'm extremely thankful that she is doing as well and is as healthy as she is. Claire is climbing like crazy, jabbering away, and keeping us on our toes All. The. Time.



Owen continues to amaze us. He is maturing so fast and is such a sweet mentor and brother to Claire. It seems like everyday he says new things that I didn't realize he knew. He is a super quick learner and loves to play with our still fairly new cats Zo and Oz.



Learning to eat

November 2014

I find that Most days have fallen into a rhythm... A breath holding, clock watching, OCD kind of rhythm, but a rhythm. And then there are days like today that just make me want. to. cry.

Just when we think things are going well; progress is being made and vomiting has decreased, we have days like this that seem to set us back.

Feeding therapy up until now has left a lot to be desired. Granted, we have gotten a fair amount of good information and Claire has taken some real steps of improvement but I don't feel like we've found our 'fit'.

One day at a time, right??? One day at a time.