Tuesday, December 1, 2009

Two steps forward....

one step back. The Brogan family calls it the Short Gut Cha-cha. We'd been sailing forward for so long that it was tempting to think that we were avoiding it. Blaise had another weight check today at the pediatrician and she's only up 2 ounces in 3 weeks. No one is pleased. We had gone down to half her previous time on the overnight feeds, but we just haven't been able to get her to eat enough by mouth during the day to make up for it. So we'll be talking with the CAIR team and deciding whether to go back up on the tube, increase the caloric density of her food or start working with a feeding therapist to encourage Blaise to respond appropriately to her own hunger signals. This isn't uncommon in tube-fed/TPN kids, according to our pediatrician who has a couple such kids in his practice, and can usually be resolved.

It's not helped by Blaise's otherwise healthy preference for nutrient-dense low-calorie foods (like veggies) over higher calorie foods (like fruit and grains). In a non-short-gut person, that's a really good thing. I'm sure my doctor would love to hear that I prefer green leafies to potatoes. Blaise, though, needs those calorie-dense foods. With dairy and eggs still off the table, it would be very nice if she would show more enthusiasm for avocado. Top that off with her increased physical activity and we have quite the perfect storm for low weight gain. We'll get past it, but it will mean closer monitoring and more work for all of us.

And now a brief political moment: I waxed enthusiastic last night about Blaise's therapist. Blaise gets her therapy through the state's Early Intervention program. Our special-needs parents' group is also through EI. I found out this morning that Governor Patrick vetoed a line item in the new state budget that would reinstate substantial funding to EI programs. These programs aren't free; there's an income-based sliding scale of fees. However, without state support, those fees will increase substantially and some services will likely be cut. With low SES as a major risk factor for prematurity and developmental delay, it's important that these services remain affordable for all families. If you live in Massachusetts and care about Early Intervention, please take a moment to email the Governor's office and ask them to reinstate this funding. Politics over. Here's a cute baby.

1 comment:

oleyfriends said...


I found your blog and wondered if you had heard of the Oley Foundation. We offer free information and peer support to families like yours with a member on home tube or IV feeding.

Check out our web site at www.oley.org. For a good overview, click on the "New to Oley" button.

Feel free to call/email me if you have any questions or would like to meet another family in a similar situation.

Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
(800) 776-OLEY