1st Day of the Feeding Clinic

We survived our first day of the feeding clinic! Actually, we did more than survive - Elli really did better than I could have hoped. It was an exhausting day for both of us, but I know that after a week or so, we'll get in the swing of things and be used to our new schedule.

Today's schedule involved 2 parent-baseline feedings (i.e., I fed her as I normally would at home), so that they can determine where we are at this time. Then she had 1 therapist-baseline feeding, again to determine how differently she behaves for them. From there, they will determine their plan of action, and we'll go from there. All other days, she will have 4 feedings per day. Other activities today included a weigh-in and measurements, talking with the dietician, a physical/medical history discussion with the R.N., a meeting with the social worker and paperwork that needed to be filled out, introductions with the child-life specialist, meeting the feeding tech that will work with Elli (we had already met the speech pathologist that will work with her), a tour of the entire facility and surrounding area, and an intake meeting with the child psychologist. Amongst all of that, we did squeeze in one short walk outside, some play time for Elli to get accustomed to the facility, and a 30 minute nap for Elli. (She could have slept longer, but woke up screaming...hopefully that will go better tomorrow!)

The one really interesting thing from today's session was that our speech pathologist explained why Elli drinks and eats better standing up and walking around than she does sitting down. She noticed that Elli tends to slide down in her chair and slouch (despite our best efforts to keep her in a supported upright position), and when she slouches like that, even a little, it makes it much harder to swallow and eat. When she's standing up, all of her anatomy is in the proper position to swallow, and gravity can help. Due to this, they will be evaluating her current seating situation, and they will then recommend if a change should be made.

Thanks to all of you for your prayers - they are greatly appreciated!