This spring we have finished most of our “formal” studies and have enjoyed shifting our learning to more relaxed pace of nature exploration and outdoor pursuits.
On our walks we have observed orchids, woodpeckers, owl pellets, dragonfly larvae, and one of our favorite, caddisfly larvae. These invertebrates are fascinating as they build their own homes with materials such as tree needles, shells or pebbles.
On a recent walk with friends we collected some eggs from a drying up ditch, and a few tadpoles that had already hatched. Over the next couple weeks we have been enthralled watching pond life in our aquarium. We have observed a mosquito larvae change to a pupa. We have watched the caddisfly’s build onto their homes. There are many tiny tiny insects jumping up in down in the water. The most exciting find was noticing our tadpoles looked different. We had in fact gathered two different kinds. I was stumped as to what one of them was. They are a spotted brown color and have external gills. This is when after a quick google search we realized we have salamanders!
I’m quite excited to see all the changes in our “pond.” If anyone one has suggestions on how to keep our little ecosystem alive and happy, and any information on salamanders it would be greatly appreciated!
May 4th is National FPIES Day (In Oct there is a Global FPIES day, so we get two days to reflect, advocate, and celebrate the small victories in this overwhelming disorder). I’ve been thinking about our journey over the last couple years and how it has changed our family, our lifestyle and me as a mom. We have come a long way. I haven’t written in so long, it is pretty amazing to see how much has changes since my last post. I’ve been busy and we’ve all been growing! I have been stretched and grown and learned to deal with the challenges. My faith has grown as I learned to rely on God’s strength and trust His will for my child, knowing He loves her more than I can imagine. Most days I can deal well. But there are still the occasional days where the overwhelming feeling of responsibility makes me want to hide under the covers all day. The days I’m so tired and would give anything to be able to order take out, eat out or make a quick simple meal that feeds my whole family. These days I really struggle with self pity and jealousy. For example, today after taking four kids grocery shopping I was exhausted. I came home to make a “easy” lunch of grilled cheese sandwiches. That is 3 totally different sandwiches.
Miss A has a good base of foods now that she tolerates and has celebrated the additions of a few previous triggers such as chicken, carrots, pineapple and recently wheat! That’s pretty huge for us. It’s giving us hope that she is outgrowing this. We still have a handful of food triggers to test, some of which will be done in-hospital due to the severity. We are planning those for around the time she turns 3, this fall. Food trials are stressful. I need to offer her the food in the morning so she will not react while sleeping which can be dangerous with the vomiting and if she goes into shock. After the food is given the waiting begins. I need to be mentally and physically prepared to go to the ER. She typically reacts 2hrs after ingestion. I prefer to be home during trials in order to deal with any symptoms and also to be close to the hospital.
Looking back, I remember the worry of Miss A picking up anything and everything and putting it in her mouth. The stress of any food being left on the food. The work of meticulously cleaning everything. These days the challenges have changed. She is 2.5 yrs now which amplify some other concerns. Like the new-found defiance when said she can’t eat something, the understanding that others are eating things she cannot, and the picky eating phase! Whew!
In the last 2 weeks, our family has had 5 reactions, two of which took us into the ER. None of those were Miss A though! Though I am hopeful that she will be outgrowing this soon and know that it will be a huge relief, our family still deals with “normal” IgE allergies as well. In fact Miss B has been in the ER more times than Miss A for reactions.
I am currently in a period of suspense as our newest child, sweet Mr. D, has reached 6 months and has begun solids. Unfortunately he had an episode that looked horribly familiar to Miss A, resulting in a trip to the ER. And another milder one a few days after that. I am holding off solids for a few weeks to rule out stomach bug and see what happens when we resume solids. There is a good chance we will be dealing with FPIES all over again. If so, I am hoping the last 2 years of experience will make this round a little easier.
However, in and through all of this, I find joy, hope and strength. I have been blessed by friends and family that have made the enormous effort to make safe foods for us, or even just to welcome us over for fellowship while we bring our own food. FPIES and allergies can be so isolating, but we have some good people in our lives, whom I am so thankful for. It has made all the difference! So a HUGE thank you to everyone that has supported us over the last couple years with prayer, encouragement, food and fellowship. Thank you from the bottom of my heart!
I was actually not planning on starting school quite so soon into September. I wanted time to settle down after summer and get organized. However my girls were so excited and eager to start and I didn’t want to lose that momentum, so we dove in. What a splash! Over the summer the girls really enjoyed the Disney character Moana, with her bravery and independence. We also listened to Island of The Blue Dolphins on our long drive. This also featured a strong courageous girl. Seeing they both were set in the sparkling blue waters of the ocean, I decided to kick off our school with an ocean themed unit study.
It was a lot of work pulling ideas and plans off the internet (THANK YOU PINTEREST!). But it was so much fun.
One of the things I think I will love most about homeschooling, is watching the girls play together. I especially loved the three of them giggling together at lunch time. I will cherish these times when it gets tough, and it will remind me of why I’m doing this.
We colored the world oceans and learned a song naming all of them. We found numerous books from the library on our theme. We went to the spray park on one of the last hot days of the year. We learned about dolphins and the dangers they face from fishing nets, making sure to check our tuna cans for the dolphin friendly lable. we enjoyed making artwork.
With a crayon resist project and a ocean layers in-a-bottle experiement we learned about oil and water repelling and density of liquids. We watched a Magic School Bus episode on sinking and floating. The girls enjoyed free play in sand and water with shells, coral and animals.
We created a “lap-book” compiling some of the facts we learned on animals, ocean layers and names of the world cceans. The girls both became very interested in dolphins, so we finished our unit with the films Dolphin Tale and Dolphin Tale 2, about a true story dolphin named Winter that was rescued after being caught in a fishing net and fitted with a prosthetic tail. We visited Winter’s website where we could watch live-feed video of her swimming around at the aquarium she lives at in Flordia.
One of our favorite activities was measuring. Outside we measured out the length of a Sperm whale. Miss B is standing at the tail and Miss S is sitting near the tip of the head. It really brought some perspective. We figured the whale was pretty much the length of our house and garage. We also traced the girls’ bodies and compared them to giant clams, shells and jellyfish. Later Miss S found a box of sand dollars downstairs, so we watched a you-tube video explaining where they come from. We also learned that when broken, you will find tiny bones inside that look like doves. We learned of the Sand Dollar Legend where the markings and structure of the Sand Dollar represent the life of Jesus Christ. This lead to a great discussion on what a symbol is and other symbols we know of.
It was a super fun unit to kick off our homeschooling. Great memories made!
Today I am reminded about the screaming and arching, vomiting and diarrhea, sleepless nights, horrible bum rashes, and awful mucous filled diapers with specks of blood that have been a part of Miss A’s first year. However I am choosing to think about how I’m grateful we received an early diagnosis and a helpful knowledgeable and supportive medical team.
I think about how much time I spend cleaning the floor and scanning for crumbs, at home and especially outside the home. I’m nervous to take my girl to other houses and buildings not knowing is she will find food she will react to. However I am so thankful for family that understands and watches out for her, and big sisters that try their hardest and are carefully taking care of their baby sister. I am also so thankful that she has not had a violent vomiting reaction since her diagnosis.
I think about how I have been hungry and extremely tired and bored with my limited diet, but yet so thankful that I have food to eat and the ability to make life sustaining milk for Miss A. I have a new appreciation for the depth, variety and flavors of our foods.
I think about how Miss A is currently limited to 8 foods, yet I’m so thankful that she is excited to eat and happily chows down a tonne of food, oblivious to the variety she is missing. I adore how she stands up next to her high chair yelling to be put in, or how she yells loudly when she finishes all her potatoes, wanting more.
I think about how in 4 months she has gained less than 1lb. At one year she is sitting at 16lbs, approx in the 3rd percentile. However I am thankful that she is not losing weight, that she is still soft and squishy, she is still happy and otherwise healthy and developing well. She is a busy, talkative girl learning new words all the time. This week she now says, “All done” after eating and “Sit down” while daringly standing up on her chair.
I think about the time I spend reading labels, phoning companies for hidden ingredients, searching for how certain ingredients are made or sourced. I am thankful that the information is out there, I am thankful for google (haha) and thankful for my FPIES support groups that a full of knowledge. I am very thankful for the increasing number of companies that are creating food products that are clean without cross contamination, that are non-gmo, organic, without additives and have helpful customer service. I’ve learned many new things, like cream of tar tar is a residue left over from fermenting wine, so it is sourced from grapes.
It has been a stressful and exhausting year. The constant awareness, hyper-vigilance and self restraint is draining. However I am thankful that we are making progress however slow it may be. I am thankful that Miss A’s sleep is drastically improving, which has done wonders for my mental health.
I am so very thankful for Miss A, FPIES and all. My heart swells as I watch her play and learn. I love and adore her so much, I would do it all over again and not change a thing. Her challenges have given me a strength, determination, and discipline I never knew I had.
Pancakes! Though I cannot claim that they taste or feel anything like normal pancakes, ha! They are flat and oily and taste just like their name, sunbutter and quinoa. I added the sunbutter to improve the flavor from just quinoa. Since being on a TED, I really enjoying having something a little different. I drizzle mine with pure maple syrup or cooked blueberries and maple syrup (with Tapioca startch if I want a thick sauce).
Again, I have no measurments for you, but I will try to measure it next time I make them and will update the post.
I mix sunbutter, coconut oil and honey together (Use maple syup if for baby under 1). Then I sprinkled the quinoa flour in till it had a smooth spreadable consistancy. If it gets too thick I add water, coconut milk or even pear juice. Lastly fry them in a pan with a small amount of coconut oil.
We recently introduced Miss A to coconut hoping it would be a great source of fats for her. She loves it! It also opens up a multitude of possibilities as there is coconut oil, shredded coconut, coconut flour, coconut milk, and coconut butter or manna. One of our challenges though is she refused puree. She wants to feed herself. But she only recently popped her first 2 teeth. So she has limited foods, that have to be in small soft chunks. Time to get creative. Enter the Coconut Meltie.
I’m afraid this isnt excatly a “recipe” as I never measure anything. But you can’t mess it up!
I took her safe foods, blended together and froze them in small plops. This way she can pick them up and feed herself, yet they melt fast into smooth soft puree.
I used pepared quinoa flakes, pears and coconut butter. Blend them together so they are a soft thick puree. Then make little plops into a freezer safe container.
Wow, what a crazy summer. I’ve been wanting to write but have just not found the time. Summer is always the busiest for my Hubby with work, often working evenings and weekends to make up for any vacation time as well as keep up with the demands of urgent projects. We were able to get away for some fun family time with both sides. Huge shout-out to all our family who have been so supportive, encouraging and diligant in keeping Miss A safe during our vacation. It was a source of anxiety to imagine all the hazards of food she could find and consume, but everyone was so careful and it all went well. I have also been incrediably thankful for the online support I have recieved from other FPIES parents who are full of knowledge, encouragement and a complete understanding of our frustrations. (So if you’re reading this, thank you!) I will be writing a bit more detailed on Miss A’s journey both to help answer questions from friends and family, and to hopefully help any other FPIES families finding themselves in the same place.
We are starting to settle in for the fall and looking forward to getting into a routine, both with homeschool and more food trails. In the last months we have had some huge successes in Miss A’s food trials, earned through some serious sacrafice on my part. Miss A has two different types of reaction to food, she can react “chronically,” typically through breastmilk, which is mucousy and/or bloody diapers, pain and discomfort, gas, sweaty skin and sleepless nights. An “acute” reaction is vomiting, diarrhea, lethargy, dehydration. Her diagnosis was based on acute reactions to banana, avocado and rice. However as we learned more about this syndrome and kept a careful observation of her, we learned she was having chronic reactions through breast milk as well. Not all FPIES kids do, but we soon learned Miss A is quite sensitive to what I eat.
So began my quest for the illusive “baseline” diet, where I find the magic combination of food that does not result in any reactions. I had been dairy free since she was weeks old, recognizing her allergy to that early (thanks to my experience with middle child Miss B). After the FPIES diagnosis I switched to a Paleo diet. She was still reacting so I then bumped down to a Auto Immune Protocol Diet removing all inflammitory foods such as grains, eggs, nuts, seeds, nightshade vegtables, sugar and sweetners, and processed foods. There had been some improvement with her chronic reactions, but we still weren’t at baseline (no reactions). So like many other FPIES momma’s I cut out most foods going on a Total Elimmination Diet (TED). I chose one or two foods from each group in hopes that we could reach baseline and then slowly add foods back in. I scanned FPIES lists of most tolerated foods and went with lamb, pears, blueberries, quinoa, parsnips, zucchini, coconut and olive oil. This is where things changed. I was shocked and estatic at the change in our little girl. Surprisingly the difference happened overnight. We celebrated her first normal poop! Hallelujah!
From there the choice is to introduce new foods for myself, or her but not at the same time. It is a slow process. Miss A now has 3 safe foods, quinoa, pears and sunflower seed butter. We are currently trialing coconut with high hopes. I have since been able to add a few items to my diet as well, my most recent additions being grass-fed beef and russet potatoes. I have come to greatly appreciate the many flavors of food and highly anticipate being able to eat more. It has been a challenge, not being able to eat out or have easy snacks, and making separate meals for the rest of my family. I’m often hungry. Since this FPIES journey started I have lost about 30 lbs. One of my greatest struggles is finding the balance between keeping Miss A healthy, and keeping myself healthy with energy for the rest of my family. We have put much thought into starting Miss A on a highly specialized elemental formula and may be at the point of turning to that for extra nutrients. But it’s not a guarantee she will tolerate that either. So this is where we are now.
With the leaves changing colors I am thinking I will have to introduce pumpkin next, as I am one of those crazy Pumpkin spice lovers, haha. I hope to post some of the recipes I have found or created to help other TED mommas and FPIES babies.
I was originally planning on starting school a bit later, but the girls are so excited and eager that we will start tomorrow, coiniciding with the public school kids. I’m excited to share with you all how are first week goes and all the fun we have 🙂
Thanks for listening! Coming up next, recipies and starting school!