This Feb. 6-10 is Feeding Tube Awareness Week and we wanted to share with you how much having a feeding tube has positively impacted our son’s life.
The decision for our son to have a feeding tube has been one of the hardest decisions we had to make for any one of our children. I want you to know, our choice to proceed was the best choice we made for the health of our fourth son who was born with a rare condition called Food Protein Induced Enterocolitis Syndrome (pronounced “F-PIES” for short).
Having FPIES means that he has a delayed serious food allergies. There are no tests for this type of food allergy and the only cure is to avoid foods that trigger this delayed allergic response. Some babies/children are allergic to 1 or 2 foods, while others (like our son) can be allergic to multiple foods which can further limit the diversity of the diet. Making things more complex, foods like soy and corn; which our son is allergic to, are in/on so many foods (waxes on fruit, can lining, plastic materials, etc) which makes his variety of safe foods became even further limited.
FPIES is a rare and often misunderstood diagnosis and, seven years ago, when our son was first diagnosed, much less was known as we searched for best options to fit his needs – to provide the him nutrition to thrive and grow, nutrition that he wasn’t allergic to. It was a constant balancing act that we were struggled with everyday.
Before he turned 3yrs, a feeding tube was discussed by his medical team for months as a means to help him thrive, and despite not having a safe formula to put in the tube, it was hoped that being able to consistently give him his safe foods would help his body absorb more nutrients and stop the viscous cycle he seemed to be trapped in. The cycle of: not enough nutrition, trialing a food in hopes of finding nutrition, inflammation causing colitis, pain from the reaction; and malabsoprtion leading to anemia, low blood sugar, vitamin deficiencies, weight loss. Trapped in the cycle was not enough nutrition to make up for the malabsorption resulting in weight loss and further anemia, vitamin deficiency, and other unknown internal disruptions to his body. And repeat with each food trial, each failed food, each accidental exposure or ingestion. A feeding tube should have been an easy decision. But, would it really help him? Neither his doctors nor we knew if it would help his FPIES but they assured us they were confident it would help him, somehow. The final decision was left to us.
No one would tell us this was the right decision. We knew the odds were that it would help him; but having a tube doesn’t make allergies go away or less allergic to your allergens; so how could it help him? We were going through so many emotions….
It wasn’t just worrying about food trials, his nutrition was compromised because of his viscous cycle with this diagnosis; he had been on TPN (a super tubie!). After 8 mo. on TPN and before committing him to a port for continued and long-term TPN, his team wanted to trial one more formula through an NG Tube. We always remain hopeful that his body will accept the nutrition it needs but after 6 weeks on this formula (4 weeks via an NG Tube and 2 weeks via the G-tube) it was clear his body was not accepting it (by his outward demeanor and sensory flares and then confirmed by inflammatory markers in his blood and stool). By this time, we had already committed to the new G-tube and moved away from TPN. What would we do now? Had we made the wrong decision?
We decided to move forward with a blended diet of his safe foods, with the hopes that his nourished body would begin to heal itself and, with nourishment we could slow down his trials to the pace his body needed for recovery between trials and we could, slowly, add more foods as we expected to do when he was first diagnosed. He fell into a viscous cycle and now his tube would break him out of this!
It has been a slow process but we have been able to add a few new foods a year, filling in his nutrition. And, along the way, he thrived. Having a G-tube with safe nutrition allowed us to finally not have to worry as much about his daily caloric intakes, how we would coax him to eat enough, doing ‘dream feeds’, staying home to prepare his foods safely and fresh. And it allowed us so much more. For the first time in years, we were able to keep his blood sugars stable, he started to sleep through the night – not waking up hungry, and he gained weight and stabilized his hemoglobin, no longer severely anemic. We relaxed around meal times, allowing him to eat his safe foods for pleasure. We relaxed our schedule at home, not having to plan the day around when, where and how he would consume his few safe foods. This allowed us to do more things outside of the home and expose him to more of life and less of hospitals. He has truly thrived. We are truly grateful for this hardest decision.
Awareness Critters is very grateful to Joy Meyer for sharing her family's journey with us.
The thing about when you have littles with Rare issues and start a project or business... the littles will always come first. They were my reason and inspiration for starting Awareness Critters. We traveled last week to CHOP, Children's Hospital of Philly, to see experts in the field of FPIES. Then this week we got news that our youngest, Baby Bear's, immune system isn't doing well. So all of my plans for getting coloring pages up (keep an eye out for them soon!), for finishing the "Awareness Critter Happy Holidays" painting, and more went to the back burner because doctors visits, hospital lab draws, and more needed to happen. Still, my family and the Awareness Critters are wishing all of you a very Happy Holidays!
I was incredibly honored to write a guest blog post for the FPIES Foundation about how the Awareness Critters came about and my hopes for how they can impact families and the future of the project.
Scattered in between some really horrific articles and posts flooding my newsfeed, there have been more and more posts about safety pins starting to trickle in. You can read more about this symbol and how it came about in this the article. The meaning of the safety pin boils down to a very tangible safety. "I am a safe person", I will stand beside you, walk with you, talk to you, and help to defend you.
In a time when many of us, no matter which "side" we were on when it came to voting, are struggling to find a way to express to those around us, strangers and loved ones alike, that we are still who they thought we were. That we are safe. That even though it might feel like the world is changing in a rapid and unpredictable way, that we are still going to love and respect our family, friends and strangers alike. The safety pin can be that symbol.
Yesterday, I put on my safety pin, and the Awareness Critters did too.
One last note, with this symbol comes responsibility. You are pledging to those around you to be a safe person. Think about how you are going to respond or help to de-escalate situations if/when you encounter them. Think about how you plan to respond if you are alone, with a group, or with your children. There are several good articles and posts talking about this very topic "So you want to wear a safety pin" and the wonderful illustrations by Marie-Shirine Yener, on what to do if you witness anti-Muslim harassment, but it can work in many situations.
This is not to in anyway dissuade you or your family from wearing safety pins, but to make sure you know think about the true meaning and significance of what it can me if you do put them on.
My Facebook feed is filled with angry, scared, mean, sad, and a few happy people after this election. I have my own opinions and thoughts about all of this but the biggest one is that we need more kindness in this country and this world. So instead of "Go Vote" I changed the painting to say "Be Kind"... Please be kind to each other, always but right now especially, reach out to those in pain and afraid, stand up to those who are being cruel or hateful, most of all, just love each other!
Harriet the Hedgehog loves to pick wild flowers with her friend Sarah the Sparrow in the springtime. She also loves showing off her new insulin pump and the special belt her mama made for her. Harriet the hedgehog has Type 1 Diabetes and her family and doctor decided that an insulin pump is the best choice for her health.
JDRF is linked with this Critter: http://www.jdrf.org/
Welcome our newest Critters, Eva and PopPop Otter. They are Awareness Critters for Pancreatic Cancer. It is perfect timing, since on top of November being a lovely time of the year when the weather changes and turns colder, it is also Pancreatic Awareness month. So help spread the awareness about this aggressive and nasty rare cancer. If you would like to read more about Eva and PopPop's story head on over to their page!
by Nicole Dodson-Sands
There was a storm a brewing but this I did not know.
The lightning came and struck me I had to let my baby go.
The clouds came and surrounded me the sadness did not seize.
The tears and pain engulfed me and brought me to my knees.
I knew this wasn't over that the storm would carry on.
My dreams to have another were not completely gone.
Then as the storm was fading there was a rainbow in the sky.
I held my baby tightly and wiped the tear drop from my eye.
Nicole is the mama to 8 children that run and 4 that fly. She wanted to keep the memory of her children alive and felt led to become certified as a Loss Doula so that she could help families experiencing the loss of a child at any point during pregnancy or shortly after birth. She has also been called to become a Birth Doula and helps families welcome their Rainbow Babies earth side as well as guiding families dealing with a high risk pregnancy or those that have dealt with birth trauma in previous births.
You can learn more and follow her journey on Facebook or at, Inspired Birth and Families
Sometimes I forget how NOT normal our life is. We have our groove, our system, and the way we make our life work. It’s not perfect, and it’s not easy. We sit out of a lot of “normal”, because it’s easier sometimes. This time of year especially, there is a lot that we do not do, a lot of places we don’t go, and so many people we do not see for months at a time.
We have fun together, the three of us. Most days spent with them are a blast, and we love to laugh. Wyatt’s turned into quite the prankster in the past few months, and he lives to tell jokes, make us laugh until we cry, and the stories, oh his stories. This kid is full of one liners, and I never grow tired of them. He’s naturally a tinkerer, a dreamer, and full of wonder at how and why.
Tonight we had our Trunk or Treat at our church. I took a bunch of little toys (finger lights, dinosaur toys, etc) so people could hand them out to Wyatt and he could have a night of “normal”. Gram made him a new Star Wars mask to wear with his Han Solo costume, a costume that every detail was agonized and speculated over for the past month. We didn’t go to the dinner portion to try and keep him from the food and extra germs as much as possible.
This has been all he has talked about for days… days. Tonight, as we wandered from car to car, pumpkin pails in hand, I watched my kids with wonder. I was at ease knowing that he would get some treats, even if it wasn’t from everyone. Reagan was relaxed and didn’t feel guilty accepting a treat when her brother would have none. But, Wyatt. I cry just thinking about him. Words cannot fully describe the joy on my boys face. The pure, unheld back joy on his face, I will never forget it. Watching his jump up and down realizing, finally, something just for him. His sweet voice, a smile I cannot get out of my heart. Just being 5. There aren’t many moments in public that he gets to just be 5. There aren’t very many moments he gets to do what everyone else is doing, and just be the kid he deserves to be.
I’ve been choking back tears all night, at a moment that most won’t even think about 24 hours from now. A moment so normal to childhood most put little thought into it. At five years old, it’s a moment that’s never happened. Several people bought him special prizes, those ones choked me up, because it meant they purposefully went out of their way to think of my child. To allow him to be just five years old for an hour.
All night he’s pulled out the toys from his pumpkin pail, looking over each one, his smile so big, showing anyone who comes into the room. Tonight, he fell asleep with finger lights on his fingers, glow in the dark spiders in his bed. Tonight, my boy got to be just a five year old boy in a rockin’ homemade Han Solo costume. Never have dollar store trinkets been so valuable.
Our guest author for today is Jessie. She actively works every day on raising awareness about FPIES, a rare form of food allergies, which her son Wyatt, suffers from. She is the mama of two beautiful children and loves to bake and spend time doing crafts, such as making awesome costumes, with them. You can follow Jessie's writing on her blog Hope For Wyatt