New Feeding Therapist

It is 1130pm, but I wanted to post about a new development in Tucker's life before going to bed, just in case I forget the details. I am not sure when I'll be able to blog again, as our busy lives just will not slow down!

I could write a book all about the epic saga of Tucker's feeding history. I like to place most of it out of my mind, so that I am not thinking about the times we've all tried before and failed to get him to eat. There are a million reasons why Tucker won't eat, and up until a few weeks ago, I had really given up.....we have much bigger issues going on, such as getting him to talk and interact with kids, getting him to learn more, etc. So feeding was on the "back burner," but of course my definition of back burner is having him in OT twice a week all summer ;)

The ABA consultant that is working with Tucker on behavior and learning actually consults with kids all over the country. Her specialty is not feeding, but she works with someone from Philadelphia who is a feeding specialist. This therapist, Jennifer, was accepting new clients, so Amy referred us to her.  At this point, we had just started the evaluation for regular ABA therapy with Amy, we were trying to figure out Tucker's summer plans, etc. So I really didn't rush it. I sent her Tucker's medical history (which always is hard to read in black and white, especially to a new person), and she was not sure if she could help him.

She said that kids need to be at a certain point from a sensory and oral motor standpoint, and it didn't sound like Tucker was there.  She is a behavioral therapist, meaning she uses the principles of ABA to push through the fear and resistance related to the feeding issues. She uses reinforcers (things that Tucker really really wants, like Chris's power tools and his firetruck toys) to get kids motivated to eat. And yes, we have tried this a million times, with no success.  BUT we've tried it on a much smaller scale, and never with a trained behavioral feeding therapist.

After she emailed me saying that she wasn't sure Tucker was ready, I looked over the fees anyway. She said that sometimes insurance covers 60%, so that would go a long way in covering the costs.  I planned to start looking into that before contacting her again.  A few weeks ago, she emailed me to give me the updated "parent" fees, meaning a fee schedule with much lower fees for parents who would pay out of pocket. Coincidentally, Mrs. Terri, Tucker's feeding therapist, sent me an email on the same day about Tucker's eating progress and where she thought he was.  So I forwarded that email to Jennifer, and started an email chain between the two of them. They were very excited about working together.

Now in case you did not notice, I wrote that Jennifer is located in Philadelphia....not exactly a day trip from here to there.  The amazing thing is, she travels around the country, and will do an in-home program. There are several great feeding clinics around the country, we could put Tucker in one for 6-8 weeks in Baltimore, Omaha, Denver (maybe there are a few more), and he would be inpatient that whole time. Now where would I sleep, eat, or how on earth could we function without our family for that long? I don't know. Also, some kids get off of the feeding tube in that time and are totally fine without it. However, there are some kids who go home and regress back to not wanting to eat because they are back at home and don't associate the home environment with the oral eating. So I think that a home program is definitely the way for us to go, if we pursue this type of therapy at all.

In order for Jennifer to come to our home, we would need to cover her flight, rental car, mileage on the rental car, hotel room, and meals. So that adds a good bit to the total, of course, but we are looking into insurance covering it.  For this reason (the travel costs) Jennifer usually conducts the initital evaluation over the phone and also through Skype (webchat).

Two weeks ago she emailed me to tell me that she had a last visit scheduled in BR with another family. This little boy was off the feeding tube, and she was just flying in for two days to wrap up with him, and touch base with his school, the parents, etc., on his progress.  Since that family was covering all of her travel costs, she asked if we'd like her to do the evaluation in person? I couldn't believe our luck.....except I can, because honestly, these types of things happen to Tucker in his medical care all the time (thanks for the prayers everyone, you may not always know what they are for, but trust me they work).

So we scheduled a home visit for Monday evening, Mom, Chris, and I were there. Jennifer watched us feed Tucker, he self-fed mashed up cheetos and graham crackers, I spoon fed him mango sherbet, and he had water in a sippy cup. Less than 1% of the food made it into the back of his mouth, which is normal for him.  Still, Jennifer was very impressed.

After Tucker "ate" his dinner, he fell asleep. So Jennifer, Chris, Mom, and I talked for a while. She said that Tucker is much better off than she thought from reading his medical history. She thought she was going to have to push him to touch food and be around food, but he is way past that. She said he has so much oral motor skill, and wants the food so badly, that it must be very strong fear of foods that is stopping him from taking the food into his mouth and swallowing it. He won't even let the food get in, Jennifer calls it pecking.  Jennifer was also impressed by all of the feeding tools we have (we could open our own therapy store, haha), and the fact that we had separate places for eating orally and tube feeds, and also that we blend his food. 

I was impressed by Jennifer for many reasons. One important reason is that she plans to keep feeding him healthy foods. This may sound obvious, but most feeding programs go for just high calorie foods so that the child can eat less volume.  (Remember the all-cheesecake diet from when Tucker was two??)She said that we will work with high calorie veggies, fruits, avocado, peanut butter, etc. and that she wants him eating from all food groups. So that makes me happy, as Tucker pretty much has a perfect diet right now, and I don't want to trade that in for a kid who only wants McDonald's.

Jennifer also observed an OT session with Mrs. Terri today as part of the observation, I am not sure how that went, so I am waiting to hear from Jennifer with the final report.

I am not sure what our next step will be, or when we would start therapy. The way it works is that  Jennifer would come into our home for 3-5 days. She would work with Tucker directly for a few hours, then she would start parent training, which he already warned her will be tough! She would get Chris and me (along with one of his school aides) trained on how to feed him. She would also not feel comfortable leaving until Tucker is taking at least one to two ounces of food orally at each feeding.
I asked her how long that would take, as I don't think she wants to move into our house! And she said "maybe a few hours." Haha, Chris and I looked at her like she had lost her mind. She said the quickest she got a child to go from 100% tube dependent to 0% tube dependent was one DAY, the longest was one year.  We all know that Tucker takes his own time and never follows the rules, but I have to admit that she has given us new hope that Tucker could eat by mouth. Once she decides to work with a child, it is because the child is ready.....so I guess she doesn't have any failures... Tucker has done simply amazing with the ABA therapy, so it makes sense that applying those principles to feeding would work.

Pray for us, as we take several leaps of faith on this feeding journey.

Tucker also has an appointment with the geneticist in New Orleans on Thursday, and Chris, Tucker, and I are heading to Houston next week for an appointment with the sleep specialist and overnight sleep study.....and did I mention that we are doing intense potty training this weekend, ABA style???

Amy said it will be pure hell for a few days, then if Tucker is ready, it will be amazing and work....so please pray that he is ready!! I know that I will do anything I need to do in order to care for Tucker, but we are going on 5+ years of diapers here, I'd love for us to trade those in for the big kid "unda-way" as Tucker calls them.