Time to Start Challenging, and Almost Normal

Oh boy, it’s about time for an update!

In March Wm had his 18-month check-up. The doctor and I discussed if we could challenge milk. He talked to two gastroenterologists and a pediatric allergist, and they all agreed that it is best to wait to reintroduce milk until he is 3 years old. Sigh. That seems like forever from now. I was so anxious to try milk again and hopeful that Wm has out-grown FPIES. It would be so nice to not have to worry about what he can eat, and just have “normal” meals that I don’t have to tailor for him, and to no longer have to explain why he can’t have “regular table food.”

The GI doctors did say that we can s.l.o.w.l.y introduce soy, rice and oatmeal – the big ones that kids who react to milk will also react to. We are to do small quantities of one food at a time for a month each, and increase the quantities each week. We started with soy milk since I am trying to wean Wm (I want my body back!!) and he needs a new source of calcium since he isn’t nursing as much anymore. We are now on Day 5 of soy milk and he LOVES it. I started with “a splash” – I’m guessing it’s about a tablespoon. He gulped it down so fast and then wanted to know why there wasn’t more! I was so happy he loved it, it was hard not to fill up his cup.

I’ve given up on exact measurements for his portions of food. I stopped keeping a food journal months ago. I don’t even pre-make his safe foods and freeze them in ice cube trays anymore. It’s just so exhausting. We have been trialing new food every two weeks for over a year and Wm hasn’t had a reaction to anything new. (Be sure to check out the Our Food List tab for the updated safe foods.) FPIES is getting old, especially since it seems clear we don’t have to be on our guard with new food.

We went to visit Wm’s great-grandma this last weekend and ate out quite a bit. We were able to order food for Wm off the kids’ menu for the first time. Ever. It was a momentous occasion of normal. I cannot explain how much stress has been lifted from my life to not have to pack every meal just to spend the day a Grandma’s. To not have to carry a mini cooler into a restaurant. To not feel like a pack mule carrying what feels like 13 bags anywhere we go. To not have to guess how long we’ll be out running errands and bring two meals “just in case”. It was so nice to be almost normal.

On a lighter note, here is a four-generation photo from this weekend! Wm didn’t really want to sit still for a picture. 😉

Food trials: pears, wheat, blueberries

Life has been rather crazy since my last post. Having an 18-month old boy can do that.

Anyway, pears, wheat and blueberries are all passes. We trialled the wheat in the form of saltines and animal crackers. Did you know that most crackers use powdered milk as “glue” to get various flavorings to stick to the cracker? Since William reacts the worst to cow’s milk, that made it a little tricky to find a brand of crackers that he could eat. We found a brand at our local organic-focused grocery store and William LOVES them.

So much so that I’m afraid we’ve created a monster because they seem to be all he wants to eat. Yay for tantrums. Of course, with most organic/specialty foods they’re kind of expensive. Especially the animal crackers. I’m thinking of switching to regular saltines.

Now we are trialling pork. So far so good.

Food trials: carrots and corn

Both carrots and corn are passes. He didn’t seem too thrilled with carrots; I really wish I could put butter on them. Maybe I need to cook them a different way. I’m really happy that he can have corn. I’ve been struggling finding snacks for him, usually giving him more of the same food he gets at meals. Now we can try Kix! He hasn’t had anything crunchy before so that should be interesting.

William recently had his 15 month check-up. Everything is good, but his doctor said that if his growth rate slows down at his 18 month check-up we’ll have to look into a formula to supplement and/or replace breastmilk. He needs some source of calcium. I’m slowly working on weaning him by 18 months. He’s not nursing as much lately – mostly for comfort or to fall asleep (sigh, that’s a whole other issue) – now that he’s primarily eating solid food.

We can challenge dairy and oatmeal when he’s 18 months. He hasn’t had any new reactions since March. We’ve also fudged a little and have given him bits of trialled food, usually when we were out to eat or at a relative’s and ran out of his food. He didn’t have a reaction then, and he seemed to enjoy the change. We’re really hoping he’s already out-grown FPIES. We’re getting really tired of it.

Food trials: avocado and broccoli

William loves peaches so it’s nice to have another fruit on his list. And he’s able to pick them up by himself now.

The next two foods haven’t gone so well. He does not like avocado or broccoli. They always ended up on the floor and he would not eat them from a spoon either. I guess they were something of a chance anyway. It wasn’t until afterward that I was told that broccoli is too potent for his taste buds. I’m not sure what it was about avocado he didn’t like. Oh well, on to something else.

I confess I’ve been very lazy about getting him started on whatever the next food will be. Not only because I can’t decide what food to choose, but because I’m getting tired of food trials. He has a good variety right now and he likes it (except now the green beans end up on the floor more often than not) so why be in a hurry to move on to another food?

And we’ve been doing a big no-no: giving him new foods during a food trial. We seem to do this when we go out to eat or are at a family function, and William has already eaten at home but is still hungry and we haven’t brought more food for him. So we take our chances with untrialed fruit, or order a poached egg, or pull the breading off a piece of fried chicken. I suppose I should be thankful that we can do that for him and that he doesn’t have a long list of unsafe foods (he hasn’t had a reaction to anything since March), but I still feel like we’re being sloppy.

First Birthday!

I can hardly believe William is one year old! I really don’t know where the time went.

In addition to cleaning for company, which is rather daunting with an energetic one-year-old boy following behind you pulling out everything that you just put away, the biggest concern is the First Birthday Cake. And when your birthday boy has FPIES and reacts to many of the essential cake ingredients, the First Birthday Cake becomes a source of stress. We couldn’t use regular boxed cake mix because it calls for butter and contains wheat. We couldn’t use gluten-free cake mix because they use rice flour. We certainly couldn’t buy a cake. And we were still in the middle of the egg trial so that was still an unknown.

I scoured the interwebs and the blogs of other FPIES families, searching for ideas for an alternative birthday cake. But all I found were recipes with varying combinations of safe foods, trigger foods, and we-haven’t-tried-them-yet foods. And while the recipes I found on other FPIES blogs were closer to what I needed, the fact that every FPIES kid reacts to different foods meant that even those recipes contained things we couldn’t use. Very frustrating and disheartening.

We entertained the idea of taking the best matches of the recipes and Frankensteining them together, but only for a little while. We were running out of time to experiment, and, quite frankly, I was very overwhelmed and tired.

So we decided to make something out of the foods we knew were already safe for him and make a non-traditional birthday cake. (I’m so sorry I didn’t take any pictures of the cake; I was so stressed by this time I hardly knew what I was doing.) We took a little 1-cup round Pyrex dish and lined it with sliced bananas and made a sweet potato-banana-applesauce filling. We let it chill in the fridge overnight, and popped it out onto a plate.

Oh, I wish I had a picture of William’s face when we set it in front of him! (btw, bananas are his absolute favorite food in the whole wide world). When he saw his cake made of bananas his eyes widened like saucers, and he dug in. He had just finished a fairly big lunch, but there’s no way he can say no to bananas! About half-way through the cake, he started slowing down and slumped in his high chair. Finally, he slowly picked up a banana, started to bring it to his mouth but instead his arm slowly swung over the edge of the tray and he dropped the banana on the floor. He had achieved Food Coma. The non-cake birthday cake was a success.

On to the presents! William hasn’t quite gotten into the destruction of gift wrap, but he had fun pulling pieces off while I turned the present. That lasted for about three presents, then Luke and I opened the rest. He got lots of fun things, the most fun, of course, were the boxes. Here are some pictures from present time. Enjoy!

Food trial: peaches

Chickpeas are a pass! As the end of the chickpea trial was getting closer, I was having trouble deciding what food to start next. Since we can only introduce one at a time, it’s really hard to pick which food to go with. Should we start another meat? And there are so many vegetables to try. But he has several safe veggies and only two fruits. After talking with some of my friends I decided on peaches.

We started peaches yesterday. William is not quite sure about them yet. I think he likes the taste, but they’re very slippery and hard to pick up. He seems to do ok when I give them to him on a spoon, but he is so independent now and used to eating by himself that he gets frustrated with being spoon-fed and eventually grabs the spoon. But it’s only been two days. He’s bound to figure out how to pick them up. Although, I have been cutting them fairly small since he has gotten in the habit of grabbing handfuls of food and continually shoving food in his face like a conveyor belt. And I know he doesn’t chew very well; he’s choked a few times from eating too fast/not chewing (he’s able to cough to fix it), and his diapers provide the conclusive evidence – whole unchewed pieces of food. (TMI, sorry.) Granted, he only has 5 teeth and they’re all in front. Maybe if I cut the pieces a little bigger they will be easier to pick up?

Food trials: egg, applesauce take 2, & chickpeas

It’s been a while since my last post so I have a little catching up to do. Black beans are one of William’s favorites. He actually picks them out from other food and eats them first.

The food trial after beans was egg. Hard boiled was obviously the easiest way to go. He liked the white right away but was a little unsure about the yolk. I think it was because it was too dry and crumbly. But he’s decided he loves it.

Next I decided to give applesauce another try. He seems to like it but still makes a squnchy face when he first tastes it, but he really seems to like it now. I’ve actually found an added bonus tohaving applesauce on the menu: mixing it with the shredded chicken. Yeah, I know that doesn’t sound terribly appealing, but the chicken ended up a little dry this time. Adding a little applesauce really helps it go down.

And the next food trial is chickpeas/garbanzo beans. These are what I should have trialed instead of the black beans; chickpea flour is more common and available than black bean flour. This time I used canned chickpeas. I found that they were a little to hard and dry straight from the can, so I cooked them a little bit and that did the trick. And William seems to like them.

Wow, I think I’m caught up now! Tomorrow is William’s first birthday (where has the time gone?), and I’m eager to share how we did his cake. And we recently took our first family vacation! I hope to get those pictures up sometime soon.

Food trial: black beans

Yay, bananas are a pass! We are now trying black beans, specifically black turtle beans.

Here are the reasons for why I choose beans: 1) I wanted William to have another protein in his diet (chicken is kind of expensive and he eats a lot), and 2) I’m researching recipes for his first birthday cake. He can’t have wheat, rice or nut flours, but I found that there is coconut flour and bean flour. Coconut flour can be tricky to work with because it doesn’t bind well and it takes a lot of trial and error to get the right amount of extra liquid in the recipe so the cake doesn’t just crumble to pieces. I don’t have that much time to experiment so bean flour it is. But after I started making the black beans I read that bean flour is made from chickpeas and not black beans. Oops.

Anyway, today was Day One of the turtle beans. William needs more finger food so I left the beans whole, and squished them just a bit when I gave them to him. He loves them! He just gobbled them up. I love it when new food is a hit. Now here’s to hoping it’s a safe food, too.

So hard not to worry

One of the last times we went to the park, I couldn’t help but overhear a pair of moms who were sitting down for a snack with their kids. The one was commenting on how she always brings extra snacks to the park in case she runs into a friend who forgot to bring a snack for her kids. The other commented on how kids in general always love crackers. I watched as the little girl with them sized up her almost-too-big sandwich. This normal and almost boring conversation left me feeling sad and left out. Because since William has FPIES he can’t have crackers. He can’t have bread. He can’t have pretty much anything that would be on a “normal” kid’s snack menu. Granted, he’s only ten months old and only has two teeth right now and they’re both on the bottom so he can’t chew, so it’ll be a while before we could even consider a sandwich. But I still felt sad for my little guy and excluded from the Mommy Circle because I can’t just say, “Oh, here, have this” when it’s snack time.

Several months ago we went to an Italian restaurant for a big family event. While figuring out how many kids’ menus to ask for, someone asked if William would be eating off my plate. Well, no, because 1) he didn’t have teeth at that point, and 2) he’d react to just about everything on the menu. I watched with envy as the other moms gave their kids pizza, cheesy bread, and pastas with various sauces. I don’t know when William will be able to have those things.

I cannot help but worry about what William might eat as he gets older and is able to run around at the park and interact with the other kids. What if a toddler tries to be nice and share his cookie with him? Cookies are full of things William reacts to: butter, chocolate (made with milk), oatmeal (if it happens to be an oatmeal cookie). We’d be off to the hospital. All because a kid tried to be nice and William is too young to understand that what other kids can eat will make him sick.

We recently visited one of Luke’s cousins. Their kids (2 and 4) were sitting at their little table during lunch and William was cruising around the floor. Next thing I know he’s standing at their table looking at their plates. I saw the sippy cup of milk, the slice of cheese on the plate, and in my mind I saw the 2-year-old sharing her milk, William grabbing the cheese, and us packing up to go the hospital. Of course, that didn’t happen, but I burst out in the middle of the conversation, “Don’t let him get anything on their plates!”

He’s still at the age where you can take something away from him and he’ll not make a big deal and just move on to the next thing. But at some point he’s going to want what the other kids are eating and throw fit when he can’t have it. I’m looking forward to that day.

I feel like I’ve already become the Hovering Mom, always following one step behind her kid to get anything potentially dangerous away at a second’s notice. Now, I know it’s natural to want to protect your child, but I already feel like I’m on the path of hovering to the point of preventing him from doing anything or even secluding him from other kids and fun things. I don’t want to be that way. But I don’t want him to end up in the hospital if I can prevent it. It’s such a fine line that I haven’t figured out how to balance on yet.

Food trial: banana

Well, it took almost a week to get around to getting bananas. Life just gets in the way sometimes, you know? Today is actually the third day trialling bananas. William does not seem to like them straight up. I think he finds them too slimy. But when I give them to him with another food on the same spoon it goes just fine.

I also discovered that mashed up banana does not keep. Ew. So that means we slice off about a teaspoon off the end of a banana (peel still on) once a day, and put a piece of plastic wrap on the open end to keep it from going bad. So far so good. We’ll slowly increase the amount he gets over the next two weeks.