Saturday, April 28, 2012

When Life Gives You Lemons, Make Egg Salad Sandwiches

Whenever I slip down into that trap of feeling sorry for myself, I try to remember all the ways I am blessed. Recently, Lilli tried some more new foods. She has been eating egg salad sandwiches and chicken salad sandwiches. This is new. A sandwich may not seem like a big deal to anyone, but trust me, it is monumental in our house.
Egg salad sandwich with canola mayonnaise on multi-grain, gluten-free bread.  
What a pleasure it is to feed her an actual sandwich. I say "actual" because it is not pureed, it is not "altered," it is a REAL sandwich, and she has only been eating sandwiches for a few weeks now. It is so exciting to me, I have taken several pictures of her sandwiches. I know that sounds a tad bit over the top-crazy to take a picture of a plate with a sandwich on it, but it is meaningful. I will forever be grateful that Lilli can bite and chew without choking. It has literally taken us years to get to this point. I pick the sandwich up and hold it so it doesn't slide apart. She bites it, but I still kind of help by tearing it away from her mouth. The biting is still a little new. I have to be careful, though. She bit my finger last week by accident. I can't get too close to her teeth or yikes! Eight year old permanent teeth!

When Lilli was a toddler, she ate sandwiches. I remember her eating grilled cheese sandwiches and peanut butter and jelly, cut up into tiny pieces. Lilli always had trouble with feeding. She had a suck/swallow reflex issue from birth. We had gotten to the point where she ate mostly baby food but small pieces of soft cut up sandwiches. But then she began vomiting the sandwiches and had several really bad seizures. One of them lasted about an hour, in the ER. They had to try various drugs to get the seizures to stop. After that one, she could not eat without choking. It was like she forgot how to chew and swallow. We had already been pureeing a lot of her food from the beginning, but from that point on, we pureed everything.

We pureed Lilli's food for every meal for over three years.

I will never get over that. It might have even been four years. All the details blur together sometimes. I am tearing up right now thinking about it. Jasen reminded me that we started out with a baby food grinder, then went to a motorized baby food grinder, then went to a Magic Bullet. When you have a little baby, making baby food might be fun, might make you feel good and all healthy and super mom-ish. But when you have a child with special needs and you're pushing on that Magic Bullet six times a day for meals and snacks for years, it gets old. A Magic Bullet is a total conversation ender. I began to despise the loud high pitched "WHHHHEEEEEEEEE" in the middle of sentences with my husband at mealtimes. If you don't know what a Magic Bullet is, it is a small blender intended for smoothies and other pureed things. You can grind coffee in it. Jasen describes it as a "blender on steroids." If you blend something for too long or if the consistency is too thick, it can ruin the motor.

We burned through six Magic Bullets.
We perfected the art of pureeing meat, eggs, and all types of vegetables and fruits. Trust me, it is not as easy as you think. You can't just throw a hunk of hamburger in a Magic Bullet and have it turn out like a frosty. If I ever lose all of my teeth someday, my dear husband will know exactly what to do for me. If it is too thick, the blades won't turn. If it is too runny, it's just yucky and drips all over the place when you try to put it on a spoon. If we got the consistency wrong and there were little pieces of unblended food in it, Lilli would choke and vomit. Many meals we spent time cooking, pureeing, and spoon feeding it into Lilli, only to have her throw up the entire meal. Such a feeling of defeat comes over you after all of that time and effort for just one meal. I also remember just breaking down into tears when the rubber ring inside the Magic Bullet would come loose and get pureed into the precious food, and we would have to throw the entire meal out.

We also became experts on spatulas. We have a sizable array of assorted spatulas in our utensil drawer, that any culinary professional would envy. The long skinny spatula is key to removing the pureed dinner from the tall Magic Bullet cup. We know we are different. I gave Jasen a bunch of spatulas for Christmas one year, and he was genuinely thrilled.

We laugh at the memories of people coming over to visit and looking at Lilli's dinner. Jasen always thought it would be funny to offer someone a spoonful of pureed meat and beans. I'm not sure they thought it was funny, but we were grasping at straws to find humor in our monotonous Magic Bullet routine. Then there were all of the times when we would be out on the road somewhere with a cooler packed with Lilli's pureed food. Jasen and I would have to do rock-paper-scissors over who would have to be the one to go into a Subway and politely ask "Would you please heat up this baby food for us if you don't mind?" It would be meat and vegetables, pureed to a gross looking brown, and put in an old, large jelly jar. (Jasen wants me to add that he personally thought it tasted very good. It was just in milkshake form, that's all.)

Lilli ate it like a champ. Poor girl.

We kept at it, even when there was no therapist or doctor telling us what to do. We were just figuring it out on our own at that point, because it seemed like the right thing to do. When Lilli was younger, we pureed her food and spoon fed it to her in order to avoid a G-tube, which one doctor recommended. As she got older, it was because she kept taking steps back in her ability to chew and swallow after each bad seizure. We wanted to give Lilli the healthiest foods possible. We felt that good, healthy food would help her brain to develop as much as possible, despite the brain damage she had sustained at birth. A feeding therapist had suggested that we give Lilli anything at all that she would eat, even if it was junkfood. Just to get calories into her. We did not agree with that. Instead, we researched healthy foods high in calories and nutrition. Avacadoes. Coconut oil. Fresh vegetables of all kinds, and home cooked, organic meats. We read several books, including The Maker's Diet, and Breaking the Vicious Cycle. We decided to put Lilli on the "Specific Carbohydrate Diet," to help her seizures and her gastrointestinal issues. Some people might think we are irresponsible for doing things without a doctor's instruction. I would say that doctors do not know everything. When there are no answers in black in white, sometimes parents have to do the research themselves. We put her on the diet, and talked with the pediatrician about it. She was a lovely person, but did not have a clue about the diet. Even so, she supported us because she knew the kind of parents we were. She told us that as long as Lilli was getting adequate nutrition, she was fine with it. We had blood work done to check Lilli's nutritional intake. Lilli's levels were all good.

Pureeing was actually a good thing, in many ways. We were able to get a lot of healthy things into Lilli that a toddler would not typically eat. Kale, beets, homemade soups with tons of veggies and broth, organic meats. We also gave her supplements and a probiotic. It was a Jessica Seinfeld Deceptively Delicious mother's dream.

Well, not really.

If I could give credit to the number one person who taught me how to cook, it would be Lilli. She taught me because I did so much research and tried so many things for her. I bought a yogurt maker and started making batches of homemade yogurt every week. I wrote everything down that we fed Lilli. Putting Lilli on the diet and recording what she ate allowed us to see patterns. We realized that she had food intolerances. It was too much of a coincidence when she ate nuts or fruits with tiny seeds such as blueberries and strawberries, and had seizures or got sick right afterwards. It did not take rocket science or an allergist to tell us to not give her those foods again. No one knows your child as well as you do…as a parent you perceptively notice the subtle or not so subtle effects foods or medications have on your child.

We started to do our own version of "feeding therapy." Lilli ate all of her meals pureed, but we gave Lilli pieces of cheerios to try and re-learn how to chew. We tried raisins. We tried those Gerber "star puffs." She slowly got re-acquainted with the process of chewing and swallowing solid food. We added chunks of food to the puree to help her with texture. The process was very slow. When you are moving at a snail's pace, it is hard to see progress. I started writing things on our calendar and in journals to document Lilli's progression. That helped me a little whenever I was feeling down.
And then one day, she tried a "Smart Puffs" natural cheesepuff.

Ever since the miracle discovery of the alluring power of a cheesy puff of air (that apparently makes you smarter), Lilli's eating has continued to improve. We got her to eat green beans – with the promise of a cheesepuff afterwards. We got her to eat small slices of cooked carrot – and then she would get a cheesepuff. When we got to the meat stage, it was tough. We went through a lot of cheesepuffs getting Lilli used to eating meat. We dipped the bites of meat in broth, pureed cauliflower or butternut squash so it would not be so dry. Meat took a long time. She hated chewing meat. I ordered "Smart Puffs" by the case on Amazon. I took a steak knife and sliced the cheesepuffs up like slicing a pepperoni log, to make them last longer. Oooh…that made her mad. She just wanted the whole cheesepuff, gosh dangit. Cheesepuffs were not technically allowed on the Specfic Carbohydrate Diet, but we bent the rules because it was the only trick we had in the bag. We have used those cheesepuffs for motivation for a lot of things. But I do not slice them up anymore. I wonder if anyone else in the world has ever sliced up a cheesepuff with a steak knife.

Now you know another part of the reason why Lilli typed "Hate chicken" to me when she could finally tell me her strong opinion about meat. She is talking about plain, roasted chicken that we pureed for years. Then dipped in pureed cauliflower or pureed butternut squash. Now she is fine with a chicken salad sandwich. Just don't try to give her a plain piece of roast chicken on a fork. (Without a cheesepuff.)

This experience with feeding difficulties is one road we have traveled as parents of a child with special needs. It has been about five years now, since that very first push on a motorized baby food blender. We thank whoever came up with the recipe for "Robert's Smart Puffs." We now reserve cheese puffs for a few select circumstances and things Lilli is working on in therapy.

So that is why I feel so blessed to give Lilli an egg salad sandwich. We have not traveled with Lilli in quite some time. The last time was actually last summer. The next time we take a short road trip, I will be overjoyed to be able to pack Lilli a sandwich, some cut up apple, and carrots.

Have you ever heard of a mom who was so delighted to pack her kid's lunch?


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