We're Home!

Rachel graduated after only 4 weeks at the feeding program. I am shocked! I thought that surely we would be one of the families who had to stay for additional time. But Rachel progressed very well and met all of her feeding goals. While she is not eating table food on her own yet, like I had hoped, she is eating 3 meals a day of 1/2 pureed, 1/2 mashed foods. She also eats 5 bites of soft chewables before each meal.

I wasn't sure how we would do at home. I thought we might revert to our old ways of battling before each session. To my surprise, Rachel never fights the feedings. She may comment that she doesn't like what she is served, but she always eats all of it. It helps a lot that the protocol developed by the feeding team remains for every meal. She knows what to expect, what is expected of her, and when the meal will be finished. It takes the fear of the unknown out of the process. And once we overcome her fear of large pieces of food, we will be moving right along.

While we were at the program, a local news channel filmed us and our friends to spotlight the clinic. Using the link below, check out my little movie star. Just click on the video for Feeding Disorders.

http://njn.net/newspublicaffairs/healthreports/

Moving right along...

YEAH! We started on soft chewables today. They are giving Rachel 5 pieces of soft food (puffs, french toast, cracker pieces) before each meal now. She's doing awesome! She actually does better with the pieces than with some of the mashed foods. But she also had a light bulb moment this morning...or maybe it was yesterday - the days all blend together. She was eating something mashed and she swallowed it quickly. She looked at me and said, "Mom, I don't even have to chew it." YES - that's what we have been trying to get her to realize for a week. She has been so afraid of the texture of mashed foods that she felt she had to chew it for a few minutes to be able to swallow it. And she was wearing herself out doing that. Now that she realizes it's OK to swallow small pieces of food whole, she can progress through the meal without getting tired. And the experts are willing to add more volume and the next level of food (soft chewables) to her routine. BIG STEP!!!!!

New Information

I was talking to Rachel's physical therapist this morning. She explained something to me that makes perfect sense, something I never thought about before that may explain some of the difficulty we are experiencing. Rachel's shoulders (her shoulder girdle) are rounded forward. I assume this may be a result of compensating after the surgeries, or maybe because of the discomfort of reflux for all that time. In any case, her shoulder girdle is abnormally shaped. And her tongue is attached to her shoulder girdle - just as it is in the rest of us! So if her shoulder girdle protrudes forward, that means her tongue retracts back because it's connected. And if her tongue is not in a normal position, it would make sense that she needs to move it more or use more effort to get it into the correct position for eating. WOW! Eating is so much more complicated than I ever thought. I hope that with more therapy and more exposure we can help her use less effort to get the food swallowed.

Challenges

Last night, I fed Rachel at our hotel room. Her meal consisted of 1 ounce of mashed carrots and 1/2 ounce each of pureed sweet potatoes and meatballs. Visually, 1 oz of mashed carrots is about the equivalent of a heaping tablespoon of tiny, soft carrot pieces. It took Rachel about 20 minutes to finish that first portion. When she was done, her face looked like she had just finished a marathon, not finished an ounce of carrots. She uses so much energy - and I think every face muscle she has - to get the food down. It is no wonder she doesn't like to eat mashed foods. The process is exhausting to her! It breaks my heart to watch her struggle and to feel powerless to help her. I think her fear is the biggest hurdle. She is so afraid she might choke, that she needs the food to be liquid before she will attempt to swallow it. The experts agree that exposure to the foods will help get her over the fear. Praise and encouragement really help, too. And I suspect a prayer or two could just get us over the hump...

It's so easy...

to take for granted the things that come naturally for most babies. Eating is one of those things. In general, learning to eat is a normal progression from liquid to solid as babies approach their first birthdays. But for children who are robbed of a "normal" beginning, the process of eating is very un-natural. For all of the children here with Rachel, eating is most definitely NOT something they will learn without expert intervention. Many children that go through the program even have to come back for a second round of camp.

In some ways we are very lucky. Rachel desperately wants to eat like her brothers and her cousins. She loves Italian food - the more flavorful the better. We are not having any trouble introducing new foods. And her reflux appears non-existent these days. Yet Rachel has had almost 4 years of incorrect or unlearned behavior that we are asking her to correct in 4 short weeks. She is a real trooper... she is never sad or angry about what we are asking her to do. And if will alone could do it, this little one would have been sharing spaghetti and meatballs with me a year ago!

It's funny... every night, Rachel takes food from my dinner plate and attempts to eat it. She is getting better and better at taking large bites and chewing them up. Her favorite is cucumbers! Yet she still struggles with the small pieces of food in the mashed foods they are giving her. I hope this is something she will quickly get over with continued exposure. Until she can master mashed foods without gagging, she will not move on to soft chewables and then table foods. Seems to me like quite a tall order to fill with half of the program already over. I may be pleading for an extension if I feel we can make more progress to get her eating "regular" meals. I know once we get home the progress will slow considerably. But that's a worry for another day.....

She's Doing It!!!

Rachel has been attending "feeding camp" for almost 2 weeks now, and she is eating! They began the program last week with pureed foods - just like you would serve to a baby who is learning to eat. While she resisted all baby foods at home, she is agreeable to whatever they serve her at camp. She has eaten 13 different pureed foods without any struggle (including broccoli & cheese, egg & cheese, spaghetti with sauce, and turkey with gravy!) Now they are mixing in some mashed foods during her feeding sessions while they continue to introduce more pureed foods. She is accepting the mashed foods as well, and is starting to use her tongue properly. Maybe we will get her off the feeding tube someday after all!

This program is pretty rigorous. She is at "camp" from 9 until 4:30 Monday through Friday for a 4 week session. She eats 4 times a day, with the same therapist feeding her every time. Every aspect of the feeding is structured; it is the same every time she eats - body positioning, verbal prompts, spoon, toys, expectations. Her feeding therapist Brittney begins with the rules - she must open and accept the food on the spoon every time it is presented to her with the prompt "Open". Then Brittney feeds her 2-3 ounces of food and 2 ounces of her formula. And she eats every drop! She still has trouble sometimes with gagging and vomiting - but those instances are becoming less common since she is using her tongue more appropriately. Part of her issue is that she does not know how to use her tongue to move the food around inside her mouth to swallow it. She gags because the lump of food just sits at the back of her throat.

I think the team working with Rachel is surprised by her progress. The doctor who runs the program commented to me yesterday that, before Rachel began the in-patient program, she didn't know what she was going to do with her. We all know how Rachel can try to talk her way out of any situation. Thankfully she was born a fighter - and beat the odds 3 1/2 years ago. But that strong will did not prove helpful at home when I was trying to get her to eat and she did not want to!

I had been postponing this type of program since Rachel was very little. But there is no doubt in my mind that the time is right and the program is right and Rachel will be eating meals by the time we leave here in a few weeks. If they are of the mashed and pureed variety, well - that we can handle!