A Typical Day - Feeding Clinic Day 14

Many of you have asked "How does the feeding clinic work?" and "What do you do all day?" So I thought I'd give you an idea of what a typical day looks like.

7:00 am - I wake Elli up, put her in her chair, and follow protocol (which I will describe in another post, along with a typical therapy session) to feed her 2 oz. of whole milk mixed with Carnation Instant Breakfast. Included in this milk is 1/2 teaspoon of Miralax, because when a child's diet changes drastically in a short period of time, constipation often results. And if a child is constipated, they don't typically eat well. So, they like to make sure the child stays regular. :-)

7:30-7:45 (depending on the day and how late I'm running) - head out the door to GR.

8:30 am - Arrive at the feeding clinic. The clinic consists of a suite on the 4th floor of a building associated with Mary Free Bed, even though the clinic is actually run by the Helen DeVos Children's Hospital. When you first enter the suite, you come into an area that looks like a combination of a living room/hospital waiting room. There is a TV, lots of toys, multiple chairs, a toy table, books, a TV with DVDs, a kitchenette area with a fridge and microwave for parents' use.

Each child has their own nap room. These rooms each contain a twin bed, and they have pack and plays that can be set up as well, depending on the age of the child. Each nap room contains a cabinet that you can lock to keep your own items in during the day and a monitor for use during the naps. When we first arrive, we drop off our stuff in Elli's nap room.

On Mondays, Wednesdays, and Fridays, our dietician weighs Elli to monitor any weight changes right after we arrive. On Tuesdays and Thursdays, we can be a few minutes later, which means a little extra sleep for us!

8:45 am - One of Elli's therapists comes into the play room to take Elli to her feeding room for her first feeding session. The clinic consists of 6 treatment rooms, so each child has their own room. The feeding rooms are set up much like the FBI interrogation rooms that you see on TV - there are two rooms, one where Elli does her feeding, and an observation room that allows you to view what's going on in the feeding room through a one-way mirror. (They even have communication systems set up so that the person in the feeding room with Elli has an earbud in their ear, and the person in the observation room can talk to them.)

9:20 am - Elli is typically finished with her feeding session, and we head back to the play room. At this point, we have almost two hours to kill until our next session. One day a week, I have a meeting scheduled with the staff social worker during this time to discuss anything our family might need assistance with, any concerns I might have, any concerns the clinic team might have, etc. Our sessions have been short thus far. :-)

The rest of the time, we are free to kill those 2 hours in whatever way we please. Typically, Elli and I go for a walk through the hospital and practice using her cane. She's gotten to the point where she likes using the cane, although I'm pretty sure she just thinks it's a toy at this point - I don't think she realizes it gives her information yet!

After practicing our walking, we usually play in the play room for awhile. During this time, a child-life specialist or volunteer typically arrives at the clinic, and they often break out interesting toys for the kids to play with, or perhaps a craft for them to make. One day, they even got us into the sensory gym used by the Mary Free Bed outpatient therapists, so the kids could play in a sand table, a rice bucket, ride a therapy swing, jump on a trampoline, etc. That was really fun!

11:15 am - Elli's next feeding session.

11:40 am - Elli is typically done with her feeding session. We head back to our nap room, and I go through Elli's bedtime routine, and put her down for a nap. I then head back out to the play room, eat my lunch, and kill time until Elli wakes up (or until I wake her up for her next session).

One day a week during this time, I have a meeting with our child psychologist, so we can talk about Elli's progress, the psychology behind their treatment program, and any negative behaviors Elli is displaying.

Another day during this time, I have a meeting with the culinary staff person who prepares all of the food for the kids. I've been learning all kinds of things about how to properly puree any kind of food, as well as how to make a gritty texture, a fork-mashed texture, etc. They apparently will give me "recipes" for all of these items before we go home. The most interesting thing I've learned through these meetings is this: Most blenders can use either a regular mouth canning jar or a wide mouth canning jar instead of the jar that came with it. Our blender at home works well with a wide-mouth canning jar, so it's easy to just puree the item in the jar, put the lid on, and put it directly in the fridge.

On the same day as the culinary meeting, we also have a whole team meeting, where I meet with the doctor who is the medical director, the child psychologist, the dietician, the speech pathologist, and the social worker. Typically, Doug has been able to call in and be a part of these conferences via phone.

2:00 pm - Elli's next feeding session.

2:35 pm - Elli is typically finished with her feeding session. We then have approximately 1 1/2 hours to kill before the next session. Sometimes the child-life specialists have crafts or other projects that the kids can do during this time. We have typically gone for a long walk outside during this time with one of the other moms/kids in the program. We've really enjoy this chance to get some exercise, talk a little, and get a tour of the Heritage Hill area of GR. There are some beautiful homes there!

Sometime during this break, our dietician finds me to give me evening (or weekend) instructions. From the first day on, she has given me a detailed plan for each day and evening - when to nurse, and when and what and how much to feed Elli. She makes these decisions based on the amount of calories and amount of liquid that Elli needs to be taking in.

4:15 pm - Elli's next feeding session.

4:45 pm - Elli is typically finished, and we can pack up our stuff and go home. Depending on any errands we need to run, we typically get home somewhere between 5:45 and 6:00. I typically feed Elli her dinner around 6:30 or 6:45 based on their protocol, and then we start the bedtime process around 7:30.

It's a long day, but it's been completely worth it. She continues to make good progress, although she hasn't gained any weight so far this week. They've been challenging her more with new foods, and she tends to take in much smaller volumes when it is a new food. We are a very long way from bringing her to an age-appropriate diet (I'm guessing 6-12 months away from that, at least), but the progress she's made has been fabulous!