The feeding journey

OK, I am painfully aware that I created this blog primarily to share about Mic's oral feeding journey, and I havn't mentioned anything about it...there is a reason for this...it would be that there isn't a whole lot to tell at the moment. Nothing too exciting anyway.
The therapist left us two big homework assignments for these weeks leading up to therapy. One is to get her tube feeding schedule to line up as closley as possible with a typical meal schedule. When factoring in calorie needs, reflux/vomit, volume tolerance, and logistics this becomes far more complicated than it ought to be. The second assignment is to create positive interaction with food as much as possible. Ideally three "meals" a day plus snacks. When factoring in the logistics of everything else I need to accomplish in a day this sometimes becomes down right impossible. My windows of opportunity are so small.
So, here we are on day five of her new tube feeding schedule, trying to get her body's habits and hunger cycles ready for this change. The new tube feeding routine looks something like this:

• 9:00am Meal
• 11:00am Snack
• 12:30pm Free water
• 1:00pm Meal
• 3:00pm Snack
• 5:00pm Free water
• 6:00pm Meal

Meals take 40 to 60 minutes. And I prepare and blenderize her meals. Nurse and make purees for my little guy. Cook for my hubby and I. ...You do the math. There just aren't enough hours in my days to do all I need to do.

BUT there is a ray of hope! I am dreaming of a day when I will cook one meal and the whole family will sit down at the same time to eat the same thing all together.......OH what a day, glorious day, that will be!!!!!!!!!!!!!!

Today in church she decided she wanted to eat lil bro's cheerios! She had at least 2 TB if not a bit more!!!!! If only I could find the key that unlocks these sudden random moments when the curtain of oral defensivness is lowered and apparently she is for a moment able to recognize and respond in a more natural way to what must be a hunger pang.

So anyway, things really aren't that bad......I am just really, really tired. In fact, I saw the doc last week. She ruled out anemia, but noted that I am underweight and my blood pressure is low. I will try some medicine soon and let you know how it goes.

over and out for now.