Allie's Abnormal Appetite: Feeding Therapy

We are blessed with having another great therapist for Allie. Allie started feeding therapy this week and so far things are going wonderful. Allie is eating for her therapist (Miss. Anna). Of course Allie is not eating huge amounts but it's a start.

I am learning new things to try in order to get Allie to eat. Allie has been eating more lately, however I have to feed her. She is starting to refuse to eat unless I feed her with a spoon. It's a weird thing but she does actually let me feed her. In therapy, Miss. Anna is incorporating play with taking bites of food. I bring Allie's food in for each session and I bring a favorite and a non-favorite food. Of course they always start with a non-favorite. Allie is allowed to play with toys but when Miss. Anna says it's time to take a bite, Allie has to take a bite. So far this is working great. Of course this is just a start and eventually they will work with Allie sitting in a chair and eating at a table like most people do :)

Miss. Anna's goal right now is to make eating pleasurable for Allie. She makes Allie take a bite but then distracts her with a toy. Since we don't know why Allie doesn't eat in the first place, this tactic is good in case Allie is having any negative or food aversions. Since Allie is playing while eating, she forgets the negative experience she's had with food. In time, we are hoping that Allie starts to enjoy food and will want to eat more and more.

I know Miss. Anna has only seen Allie a couple times but she is very impressed with her eating. Allie has issues with chewing, her jaw is very weak and it takes her a long time to eat and swallow something. Of course this is to be expected for a child who barely eats orally. Anyway, Miss Anna told me today that Allie is definitely ready to eat and she doesn't feel it will take long to get her eating more and more. That was music to my ears - I just about screamed out loud with excitement.

I do have to say that something has changed in Allie the last couple weeks. It seems that since we are allowing her to eat corn products again, her oral intake has increased a good amount. I'm praying this isn't just a phase but only time will tell. Grandpa Ray and Matt watched Allie eat a little over half of a double stack hamburger from Wendy's earlier this week. A month ago, Allie would have only taken 1-2 bites of it. I asked Miss. Anna what could be causing such an increased in Allie's oral intake. She seems to think it might be the fact that Allie was on such a strict diet with her corn allergy that now that she's aloud to eat it again, it's increased her drive and hunger to eat. Maybe Allie is enjoying the taste of food. We don't really know but whatever it is, we'll take it.

I am going to start documenting what Allie is eating daily. I have to make sure she continues to get all of her calories in each day. Since Allie is showing interest in food now, it was recommended that we reduce her tube feedings so she has a chance to feel hungry. This was one of my biggest concerns this past year. We are keeping her full with her tube feedings so why would she want to eat orally? If we eliminate a feeding or two each day, it might give Allie a chance to feel hungry. I have to keep in mind that Allie's not at a high enough weight to loose any and most of the time when children start eating orally and tube feedings are reduced, they need to be able to loose at least 5 pounds. We aren't quite there yet. So, instead of reducing her tube feedings, I am going to switch up her schedule a bit. Unfortunately it may mean that I have to get up during the night to feed her but that's okay. I'll have to come up with a schedule and then try it out.

Our ultimate goal right now is to increase Allie's oral intake but not reduce her calorie intake at all. If anything, I would like to increase it slightly. I would like to get her 1000 calories a day. Right now she's about 850-900. Her ultimate goal for her age is 1100 calories.

So, how am I feeling about all of this???? Shocked to say the lease. To hear the therapist say Allie is ready to start eating, was a miracle. Of course I'm kicking myself for not enrolling Allie in feeding therapy earlier, however I cannot look back. The reason I never enrolled her earlier is because she vomited all the time. The doctors were telling me that she couldn't possible eat enough orally and keep it down - heck we weren't even able to tube feed her enough - she was vomiting all the time. So, again this is the first time in 3 years that I feel Allie is stable enough to proceed with feeding therapy. I'm trying not to set my expectation too high - I know there will be many twists, u-turns and bumps in the road but this is a start. I have been dreaming of the feeding therapy phase for a year now and it's finally here. I feel we have picked the perfect time to start and things are just falling into place. Maybe this will be our big break and maybe it won't but if we don't travel this road, we will never know.

I'm so proud of Allie and the progress she is making. I'm also proud of Chloe Ann - she comes to every therapy session with us and behaves very well. I pack a lunch for her too and she eats during therapy. So far it's working out great. I'm thankful the therapists includes Chloe in everything - if they didn't, it would make life much harder.

We had a little "Pin the Tail on the Donkey" fun at Auntie Shannon & Uncle Mike's the other weekend. We got the whole family to play!!!! Yes, Matt and I played but we didn't get pictures of us.