Saturday, August 10, 2013


This is a plate that contains a cheeseburger, minus the bun, with ketchup and cheese, and sweet potato fries with ranch dressing. This is how I have started preparing Lucy's meals for her and it has made a huge difference in how well she can eat. She was having a lot of trouble chewing and swallowing and was just not eating much at times. I know sometimes toddlers are picky and don't eat well, but typical toddlers will not generally become underweight, or quit being able to eat on their own, which is what can easily happen with girls with Rett Syndrome. They can either start aspirating on their food and drink, or their mouths can just not cooperate when it comes to eating correctly. These problems will often lead to a feeding tube if they become too severe. Lucy has already not gained any weight since before Christmas and actually lost a few pounds, so we need to do everything we can to ensure she is at least maintaining her weight and she is continuing to be able to eat. So, enter puréeing her meals. She has started eating so much better. 

The usual motto applies to this situation as with anything else we have to do differently, "It doesn't matter how I feel about it, it only matters that Lucy needs it."  With that being said, I nearly broke down in the grocery store yesterday as I was looking at baby food pouches and trying to figure out what we can use as on-the-go snacks. We already have used the applesauce pouches for a long time, but she has even been choking on the crackers that never made her choke, so we need more options. I mean, I felt nauseous, and like I was just going to start screaming and bawling right there in Wegman's. I feel the same way as I blend up every meal and as I feed her every bite. I feel that way even more because she is gleefully eating each bite, which of course means non-puréed food was too hard for her to chew, which means a regression in her mouth's motor skills. 

This reaction could probably seem odd or confusing to some. I have sat her down in a wheelchair for the first time and barely batted an eye. I began strapping her leg braces on a year ago with only a feeling of relief. I learned to use her PODD with only excitement and anticipation in my heart. To color or paint, or try to feed herself, I snugly Velcro a cuff to her hand and don't make a fuss about it. I could go on and on. I don't know if I have talked about our traumatic nursing experiences, I probably have, but to explain my rage I feel it's necessary to repeat the woeful tale:

In a nutshell, Lu couldn't nurse. She couldn't latch on which makes perfect sense now, but at the time it was a mystery to the nurses and lactation consultants. They called her "lazy" and took all of her clothes off and put cold cloths on her to keep her awake to try and make her nurse. She had jaundice and was weak from that and from lack of calories, in addition to the fact that she had low muscle tone and no one knew it yet. So she cried, I cried, and we tried and tried for five days to make it work. Not one nurse suggested we just give her a bottle of formula, even though she needed to poop to get the bilirubin out so the jaundice would go away. And then, a nurse said something in will never, ever forget: "She will probably need to see the pediatrician a few days after you go home to make sure she is thriving." What I heard was, "If you don't get it together, your baby is just going to waste away." Like, she was just going to disappear! Irrational, yes. New mother hormones making me crazy and emotional...umm yes. The night we finally went home from the hospital, after hours of unsuccessful attempts to nurse, we gave Lu a bottle of formula. She gulped it down and instantly fell asleep on my shoulder. I had quit crying and so had she. In the following days I tried to pump several times without success because I instantly tensed up. Although I was relieved that Lucy was getting calories and she did poop out the bilirubin, I cried and cried and agonized over my utter failure at nourishing my baby successfully in the way nature intended me to.  The WIC office with their millions of posters chastising mothers who don't nurse did not help either.  

Anyway, I have been crazy about what and how much Lu eats and drinks ever since then. I believe I am scarred for life and unfortunately, not being able to eat or gain weight is one of the main concerns that can arise with Rett Syndrome. So, I think that's why it is extra hard for me. far this week Lu has eaten a sizable salad, a turkey sandwich, half a cheeseburger and fries from her Happy Meal, Brussels sprouts, and more all puréed. It's a good thing and she is fine with it. Meals are quicker, she's eating more, it's safer for her, and with puréeing things she has even more options of what she can eat.  I also bouht a small mini chopper that is powered by pulling a cord to take to restaurants with us so Lu can continue to enjoy dining out. It's just going to take a little time for me to not be filled with rage and anxiety about it. 

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