• Archive: March, 2011

    What we’ve been up to…

    Saturday, March 12th, 2011

    Kara – where have you been? Why haven’t you been posting sneak peeks from your sessions? Well, here is a post to explain where I’ve been for the past two weeks.

    As many of you know, our daughter has had many medical complications, and has had a g-tube (feeding tube) since she was 5 months old. We have been through over two years of weekly feeding therapies, which all use the “SOS” (Sequential Oral Sensory) method. Meaning – at the child’s pace, introduce them to textures, smells and tastes and combine it with sensory exercises (i.e., skin brushing, motor play, etc.) to reach a comfort level with food. Even with two years of therapies, with some outstanding therapists, it was becoming clear that this approach was not working for our daughter: she had made little to no progress in actually eating in that two-year time frame.

    One Sunday morning, when having breakfast at IKEA (a weekend regular for us!), I was hooking up Kate’s g-tube to her pump for her feeding. A mama came up to me, and introduced herself, and asked if Kate has a g-tube. We started talking, and it turns out, her son had a tube as well. She told me about a program through Seattle Children’s Hospital that uses a hunger-based approach and is one of only three programs in the country that WEANS kiddos off g-tubes by actually allowing them to be hungry. Kate has been so stuffed with formula for two years, she was literally almost never hungry – certainly not enough to make her try food, which to her, was “unsafe” and honestly, just not necessary since her nutritional needs were being met. She literally didn’t know she had to do something in order to not be hungry. As I sat there at IKEA and watched this woman’s son EAT breakfast, I had to find out more. (thank you thank you thank you JM for coming up to me and introducing yourself – you changed our lives!!)

    Fast forward a few months, and Kate was officially cleared to start the program at Seattle Children’s Hospital. We were there every day for two weeks, from 9 a.m. to 3 p.m., where we did three meal sessions with our angel therapist Karen Quinn-Shea. She showed such care and patience with Kate (and me!) – I will be forever grateful.

    Kate’s calories were cut by over 80% by 5 days into the program (fluids were maintained with water to prevent dehydration). It was simply amazing to watch Kate’s transformation. Over the course of the two-week program, Kate went from just touching food to her tongue, then taking a bite but spitting it back out, then taking a tiny bite and swallowing, then taking bigger bites, and so on…. She definitely has foods she will try (crunchy or hard foods) and foods she will not (purees like yogurt and applesauce). Her favorite foods? Bacon, Eggo waffles, M&M cookies, and most of all, White Cheddar corn puffs from Trader Joe’s…

    Kate has a long way to go to be taking in all of her calories, but we are ON THE ROAD. I could not be happier, and frankly, she’s pretty happy too. I can’t imagine being filled with formula all day AND night could be pleasant.

    Here are some photos of our journey.

    In our Radio Flyer, wandering the halls between sessions. There are just NOT enough wagons at SCH. Stay tuned for a blog post on what I intend to do about it.