Intensive Feeding Clinic Evaluation

We had Elli's evaluation at the intensive feeding clinic evaluation today. I was honestly dreading the appointment - from what we had been told by the outpatient therapist, Elli wasn't ready for the feeding clinic, and it sounded like it might be a waste of time. Plus, I was a little nervous about dealing with the doctor and the dietician, since I had heard they could be pretty judgmental. As usual, my fears proved wildly unfounded and the appointment went extremely well. (When am I going to learn to quit worrying and stewing about appointments ahead of time?!?)

The evaluation consisted of 2 hours spent with a social worker, child psychologist, speech pathologist, dietician, and neuro-developmental doctor. Elli did a great job throughout the whole thing - she was cooperative, pleasant, and displayed all of her usual feeding issues. We had to keep a food log for 3 days before arriving there, including a list of all foods offered to Elli, the amount of each food offered, and the amount left over. Today, the dietician told me ours was the most impressive food log she'd ever seen - apparently not everybody types theirs up in Excel and includes calorie amounts in the foods given. :-) (I can't help it that the forms they gave me weren't big enough to include everything or write legibly!)

There were several encouraging things that came out of today's evaluation. First, they said that we are doing everything right with Elli - giving her the kinds of foods she needs, working with her the right ways, etc. That was very encouraging to me, especially after some of the comments that the outpatient therapist had made to me this week that weren't so, um, uplifting regarding my parenting skills. :-)

Second, they said that the amount I've been breastfeeding has been good - I was a little afraid all along that I was preventing her from eating well by nursing her too much (especially given, again, the comments from the feeding therapist this week), but they said I definitely still should be nursing that much for now, because otherwise she simply won't get enough in the way of calories. (And if I hadn't nursed her as much as I had, she would have been on a feeding tube a long time ago.) So, I'm not partially causing the problem. :-)

Third, in their evaluation, the speech pathologist confirmed that Elli has delayed motor skills in the mouth, and a significant weakness in her mouth muscles, which is preventing her from chewing and swallowing foods unless they are very easy to swallow. I know that doesn't sound encouraging, but...it confirms that there is a mechanical reason she's had all these feeding issues - it's NOT just behavioral (again, contrary to our friendly feeding therapist's comments this week).

Fourth, they described their program as a positive one - although they do believe that Elli needs to give up the control issues she has and learn to accept novel and non-preferred foods when offered, they said they will work with her in a way that will still allow it to be enjoyable to her (again, in contrast to the feeding therapist this week). They said if it upsets her terribly, then the goals are too high and they need to try smaller steps, which was encouraging. They weren't real thrilled to hear that Elli has done a fair amount of screaming in her feeding therapy this week, and they are going to talk to the therapist to tell her what they want her to work on with Elli until she starts the intensive feeding program. :-)

Fifth, and most importantly, they said that, although their waiting list right now is 9-12 months, they have an opening that they are going to fit Elli into...in 2 to 4 WEEKS. Yes, that's right, they are going to get her into the program in a matter of weeks, even though the waiting list is months away! They said that Elli doesn't have 9-12 months to wait - if we wait that long, she will require a feeding tube, and they really want to avoid that if we can. Their exact words were "We think, because of who she is and because of who you are, we can make very good progress with Elli in a short period of time if we get to her quickly, and we think we can get her gaining weight, eating well, and reducing nursing. Because you have such positive things established with her, and because you are doing everything right, she's ready for us to work with her now."

A friend said a few months ago that, if the intensive feeding program was where Elli needed to be, and if she needed to be there sooner than the 6-12 month waiting period, then God could make that happen. She was so right!

They also are ordering a couple of extra medical tests to rule out a medical reason for the feeding issues. They want to do an upper GI to rule out severe acid reflux or any other swallowing issues in the esophagus. They also want to do a gastric emptying scan, to see if the stomach is emptying as quickly as it should. So, it looks like we'll make multiple trips to GR for those procedures in the next few weeks even before the intensive feeding clinic.

So, in a few weeks, we will be going to GR 5 days a week, 8 hours a day to work on feeding, for probably 6-8 weeks. So, if you wonder why I've fallen off the face of the earth for a couple of months...that will be why. :-)