Four years of fun, FPIES and finally almond flour!
Ellie is FOUR! Do you know how I know? Please ask me how I know. I know, because I baked Ellie a birthday cake!!!!! Let me just say that again. I baked this amazing and hilarious four-year-old girl her first ever birthday cake! Thanks to the wonder that is almond flour, Ellie proudly blew out four candles on an actual birthday cake this year and thought it was the best birthday ever. *Cue more of the many happy and sad tears I have shed over this sweet memory. *
Birthday Cake
Thanks to a conversation with one of Ellie’s doctors, we took a risk for her birthday. Typically, when introducing a new food, we take it oh so slow and controlled. However, after discussing with her allergist from Colorado about her upcoming birthday and my desire to make a cake for her that tastes good and looks like a cake, if at all possible, he made a good point. Sometimes the risk that Ellie may react to a food is outweighed by the benefit of letting her enjoy a really special moment. We chose the birthday cake moment, and I will never regret that choice.
Instead of doing a slow trial for almond flour leading up to her birthday with the potential for her to react before even getting a cake, we threw caution to the wind and baked this girl a CAKE on her birthday! Well two actually, the first one wasn’t much of a success look wise, so after the second try we had a winner! This is baking with limited ingredients and no recipes folks. Trial and error, and a little knowledge of baking science, until I mix the right ratios of my ingredients to end up with something Ellie is so excited about. Worth. It.
Almond Flour
Do you know how utterly fantastic almond flour is? I knew it is used all the time in gluten free baking, but I didn’t realize what a difference in taste and texture almond flour is from millet and chickpea flour. Suddenly everything I am making for Ellie is delicious. Crackers – delicious, pancakes – delicious, waffles – delicious, muffins – delicious, and yes birthday cake, you guessed it – delicious!
After Ellie enjoyed a little piece of her banana birthday cake made with almond flour, we continued with an almond trial. Since she had already enjoyed some almond flour in her birthday cake, we just kept offering almond to Ellie as we would a typical trial. She trialed almond butter, roasted almonds, and almond flour everything.
I truly feel as if I am never 100% confident when claiming foods as safe or not for Ellie, so please bear with me as I hesitantly claim that we think almond is a safe food for her. I may need to change that ruling in the future, but for now, almonds are making this baking mama’s heart happy!
Back at work
Once we were back from Denver, unfortunately without the answer to all Ellie’s issues, we resumed working with our normal Registered Dietician and Eating Therapist. They have been working with us the whole time, so they also felt the disappointment from our underwhelming Colorado trip. I love these two and truly appreciate all the help they offer us, but it doesn’t make their suggested possibilities in this meeting any easier to digest. I feel like this is a good time to mention how much I appreciate our medical team and how much they try to help us the best they can, Ellie is not an easy puzzle.
The meeting was a challenge emotionally as “what to do now” and “what to expect for later” were loosely discussed. It is truly hard impossible to have a plan when you aren’t sure what is even happening now, much less how anything will progress. However, because these two are thorough and very knowledgeable about Ellie and kiddos with similar food issues (to put it mildly), the possibility of a feeding tube was discussed again.
Feeding Tube?
Ellie is now REALLY slow at drinking every bottle and hardly asks for “milks” anymore. It is more of a reluctant acceptance than an actual desire to satiate her hunger. She refuses to drink the formula in anything other than a bottle, but who can blame her, this formula stinks and it doesn’t taste any better.
Ellie is having to take in a substantial amount of formula to meet her caloric needs on this ready-to-feed infant formula. There is going to be a point when she will need to consume more to meet her body’s nutritional needs, and she won’t be able to take it all from a bottle. Plus, this now four-year-old has got to be able to get her nutrition from something other than a bottle soon! Refrain from judgements, my child is surviving and that is all I can ask of her right now.
The Reasoning
The eating therapist made another valid point. Sometimes with oral aversion the feeding tube gives the child a break from any negative associations with their mouth because everything they “have” to take goes into the feeding tube if they don’t want to eat or drink it. This allows for the child to have more control over what goes in their mouth, and then develop the desire to eat and drink by taking away all the “gross” and “yucky” stuff. The feeding tube would not have to be permanent, but it would allow for a potential break for Ellie and a chance to work on her oral aversion.
Now please note that I am not saying that this is the plan for Ellie, it was just part of the discussion. I brought it up because I want to be as transparent as possible about our journey and possible options discussed along the way. We have not completely ruled out the option of a feeding tube at this point, but we also don’t feel like we are there yet. Plus, that would be a discussion with our GI doc. He has also mentioned the possibility of a feeding tube before and told us we could always go the feeding tube route if we felt we needed to. Just not yet!
Hurt Tummy
Ellie now has a variety of foods that she is eating, and if I list them all – plus all that I can make with the variety – it sounds like a regular smorgasbord. It IS compared to where we were a couple months ago! However, she doesn’t want to eat every day. On days she does want to eat, it may only be a few bites once or twice a day. She may ask for pancakes and then cut shapes from them, but only eat a nibble or two, and that is all she will eat that day. She doesn’t eat enough “real food” to even consider decreasing her formula intake at this point.
Ellie constantly says her “tummy hurts” now, which is so hard to distinguish what type of “hurt” that it is. Sometimes I can tell that it is gas pains or needing to poop, but most of the time it seems like it is a constant discomfort that I can’t figure out. Whatever it is, she frequently gives this as the reason as to why she can’t eat.
Her tummy pain also keeps her from sleeping well some nights. She will ask me to rub her tummy and then toss and turn in bed – we both are pretty tired some days. Do they give out ‘understatement of the year’ awards, and if so, where can I apply?
Some of Ellie’s symptoms increased with certain foods. Then Ellie was unwilling to eat the food that she was so gung-ho about the day before. This caused me to take a couple of foods off of the “safe foods” list. Strawberries and yogurt made for some delicious baked treats, but sadly they caused more problems than they were worth at this point. So, for now, they are not an option.
New Formula?
Another big change discussed at the meeting was trialing a new formula for Ellie. We have previously trialed some elemental formulas with Ellie and didn’t have any success. Now that she is four and has a handful of safe foods, we discussed trialing a Complete Nutrition drink for kids vs an elemental toddler formula.
With Ellie, we have one shot at making a good first impression with any new drink. Her eating therapist suggested a lidded cup with a straw, so the look or smell didn’t keep her from trying anything new. I will try ALL of the tricks, so Ellie got to go to the store to help pick out her special cups for her new drink. She loves her princess cups.
Thanks to hearing about this company, Else Nutrition, that uses real ingredients (mainly buckwheat, almond, and tapioca) to make their formulas and nutritional kids’ shakes, we have a complete nutrition drink for kids to try. I asked our dietician about them. She said that she has several kiddos using that brand and they are great products.
We decided to trial the Vanilla Complete Nutrition Kids Shake Mix to make this as tasty as we can with the least amount of risk.
Else Formula
I have to say my husband and I were really excited to try the new “vanilla drink” ourselves, as the ingredients sounded like real food, unlike her current baby formula. Well, the vanilla shake lived up to the expectations, and my husband and I enjoyed the flavor of the new drink. Ellie gave it a thumbs up for taste after one drink but has been hesitant to try the drink again. Darn oral aversion.
I made some cookies with the powder mix, and can I say they were delicious!? And they looked like real cookies too!! My husband and I are getting all sorts of new treats these days that Ellie so generously “shares” with us while she is supposed to be trying them herself.
The dry vanilla shake powder she likes though, go figure.
Getting Ellie to drink more of this nutrition shake is going to be our project over the next few weeks, months, who knows how long?
I am so pleased with Else Nutrition as a whole and what they offer the allergy community that I have featured some of their products in a post all their own – check it out. This is a company with products I wish we could have used when Ellie was younger, so I want to spread the word to those who may be looking for whole plant, dairy-free and soy-free babies and kids’ complete nutrition. Plus, they taste like real food! Who doesn’t want that for their child, if possible?
In the meantime
– Our lives have been busy lately with the start of school again for Rosie – 1st grade! She is such a sweet girl and loves learning. Her teacher this year has been great so far and we are so thankful for that. She is busy with both ballet and lyrical dance this year.
– I went to a family wedding with my parents and sister for a weekend this fall. Words cannot express how much I needed that mini vacation. I had not been without kids since Rosie was born. Almost seven years. Plus, it had been even longer since I had seen some of my extended family. Bonus points for walking to get AMAZING iced oat milk lattes at a coffee/bike shop. If you are ever in Lawrence, KS go to Sunflower and try the coffee! HUGE thank you to my husband who held down the fort at home for a few days to allow me the opportunity to go.
– Our garden has been picked and mostly put away for the year. It is always so much fun to grow and pick produce with the girls. My hope is that Ellie will be able to eat more of what we are able to grow next year. Or that what she is able to eat will grow here, because you had better believe I will be trying my best to grow some food she can pick and eat from the garden too. Special shoutout to the girls special friend “Spicy” the spider living in our Poblano plant.
Thank You
I want to say thank you to all of you who have continued to send encouragement and prayers.
Our family has received wonderful messages here on the blog, cards in the mail, and even some very thoughtful gifts. Everything has been so appreciated!
It is such a challenge to be in the middle of all of this. Sometimes I am too focused on surviving to the next day to be able to reach out and tell everyone how much we need and appreciate the support.
Feeling the love and support always helps. So, thank you.
A friend sent me a mug with a quote that hits home whenever I see it.
“Courage doesn’t always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.’” – Mary Anne Radmacher
I will try again tomorrow.
You can catch up on all of Ellies FPIES journey HERE