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!