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Week 1 of Liam’s time in the Feeding Day Program at Mt Washington Pediatric Hospital (MWPH) has come to an end! Before we move on to week 2, I wanted to provide an update on how this week went. I’ll preface by saying that we knew this week would be hard, its a huge adjustment for any family in the program. Also, if you want to be reminded of where we started, check out THIS POST.

Day 1

Monday we arrived at MWPH to check in for our time in the program. We signed consent forms and got a tour of the facility. They have a wing for the Feeding Day program complete with numerous treatment rooms, a parent observation room, a nurse’s room and a playroom. Then, we checked in with the nurse and nurse practitioner and went over his medical history, got a temperature, height and weight.

After that, we went into a room where Garrett and I would do a feeding session with him while the team watched through a one-way mirror to see where we are starting and then they would ask questions. He actually ate about 1/2 container of baby food for us! We answered some questions for the team and then dropped him off in the playroom. Garrett and I got about an hour to explore the Library, Family Lounges and the rest of the hospital.

Finally, we had a meeting with the team to go over his goals for the 6 week program. This meeting was with the Gastroenterologist, Occupational Therapist, Nurse, Nurse Practitioner, Behavioral Psychologist and Speech Therapist. The goals they set are as follows:

• on average drink 1 oz. of formula from a novel cup per meal.
• accept 10 bites of a novel puree/smooth food per target meal.
• demonstrated emerging lateral processing on 5 bites of meltable food per target meal.
• demonstrate 80% appropriate mealtime behaviors.
• demonstrate appropriate weight gain of 5-12 grams per day.
• caregivers will demonstrate ability to independently implement feeding protocol.

After this, we headed back south for the night ready to tackle a full day of meals the next day. We are overall content with these goals and look forward to his progress.

Day 2

This morning I met with the nurse to check him in and then I did a breakfast meal with him while the psychologist watched. I was able to successfully get him to eat about 2/3 container of baby food. However, he will not touch the cup that his formula was in. He did lick the Doritos though, so good news. Usually I can get him to eat 2 container of baby food per sitting, just the one flavor. I never said this was going to be easy, though……

I dropped him off in the playroom and then the next 2 meals I was not present for. I was able to watch in the parent observation room, though. I also got to talk to the therapist before and after each meal. They were able to get him to eat about 1/2 container of his preferred food at lunch. However, at snack he ate nothing, but sat there nicely! Overall, a win!

We checked into the Ronald McDonald House today, so we are super blessed to be staying here! I actually met a family who is in the Feeding Day Program at Kennedy Krieger Institute! We went to bed hopeful that the next day would show progress, but remembering that this isn’t going to be easy.

For now, too, they want me to keep things the way they were at home. So, he does get his bottle of formula when I get him but not at the clinic, just with me. I am okay with this as he is being monitored by doctors!

Day 3

This morning was okay, but then walking to the car from the Ronald McDonald House was rough and he did not want to leave me in the playroom. The breakfast meal was done by a behavioral psychologist and they’re using the token boards that we use back home and encouraging him to take a bite of the puree. I was able to watch from the one way mirror and gave feedback before and after. The therapist got him to take about 8 bites!! He did lick the Doritos too! Anytime he got upset, he did calm down quickly so that’s a win. They also introduced a chewy tube but he wants nothing to do with it!

For lunch he didn’t eat anything, but he did let the cup, spoon and baby food be near him. He licked the Cheetos like they are going out of style, though! The therapist told me that she was happy with the fact that he did touch and let the objects be near him! HUGE WIN.

Snack was tough – he had just woken up from a nap, and he hates that! He cried the entire session. I watched from the Parent Observation Room and he definitely is pulling out all the stops for them, throwing food, pushing it away, crying, etc. He hasn’t done that in a long time but new environment, new people, new protocols. They handle is great though. There is no forcing, yelling or anything.

We had dinner at RMH and then headed to bed for hopefully a better day tomorrow!!

Day 4

Today was overall a good day. Breakfast went okay with the speech therapist. She is one of the leads on his case and specializes in Oral-Motor Skills so she was trying her hardest to get him to tolerate the cup near him, and he was not having it. She did get him to take 1 bite of his preferred food but that was it. He also licked the Doritos. Overall, not a horrible session but not an amazing one.

Lunch was with a new therapist and she was able to get him to eat a whole container of his preferred food and then also get him to kiss the cup. Overall, this newer therapist (to him at least) was great with him and ensured that she kept him happy for a majority of the session. We all know that Liam gets upset once and he is upset for good.

Snack was good too, his main behavioral psychologist got him to eat a 2nd container of his preferred food but he wanted nothing to do with the cup. He was happy until she would ask him to do something out of the ordinary, but overall a good session. He is still pulling out all of the stops. He didn’t nap today so he seemed to be more interested in the food!

Day 5

Today we had the same therapist for breakfast and lunch and overall it went well. He doesn’t want anything to do with the chewy tube but that is not surprising to me since he is totally avoidant. He didn’t eat much for breakfast but hopefully lunch will be easier. He stayed happy the entire session, too!

Lunch was successful as he ate almost a whole container, woohoo! Again, the chewy tube was a no go, and he loved licking the Cheetos! She did a lot with his token boards and tried to demonstrate things with the cup and Cheetos. He likes to lick them but that’s it, so we are trying to work past it.

Snack was with the main behavioral psychologist and overall a good session. He ate almost a whole container, so that is good. She was able to get him to take a few bites per token instead of a one for one, so bonus! He did get upset a few times but she is always sure to bring him back to positivity before the session is over. He also kissed the cup a few times voluntarily!!

Summary

So, week one is done! It was hard to say the least but it is over and we headed home for the weekend before going back for week two. Liam has a cold, so that stinks, but hopefully he will be successful in week 2!

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