The Sweet Alexis Bakery Story:
The full story is long. Read it if you have time.
The short story: Michele's is the mother of Alexis - a girl who was born with multiple life threatening food allergies. Due to the lack of delicious and safe cookies, dairy free desserts and nut free snacks, she began creating recipes that were not only safe for her daughter but loved by everyone. Low and behold, baking magic was created and delicious creations were produced. Now, she ships nationwide to any and all!
The long story:
My daughter, Alexis, had multiple “life threatening” food allergies to the following: All dairy products and derivatives of dairy, eggs and peanuts. She also has environmental allergies and is asthmatic. She is so severe that three separate doctors have refused to perform skin tests on her for fear that she would anaphylax (a life-threatening, immediate allergic reaction to something ingested or injected). If untreated, it results in shock, respiratory and cardiac failure, and death.
For Alexis, her issues started at birth when she had major troubles nursing. She would arch her back and cry. She would wake up every few hours and during the day we would have her sleep in a back carrier or a swing just to keep her elevated. This prevented her stomach from being agitated to the allergens in my breast milk. Not only was I eating everything she was allergic to and not realizing it, but she was also allergic to the lactose that naturally occurs in breast milk. She is that severe. Sometimes in order to sooth her stomach, she would nurse for up to 3 hours at a time. Not to eat, just to sooth.
As a new mother suffering from postpartum depression, I had no idea that this was not normal. My pediatrician and two different lactation consultants just told me to keep nursing and we would get the hang of it.
Finally, after three weeks of trying to nurse, Alexis was still not thriving on breast milk so I made the socially-unpopular decision to switch her to formula. I was completely devastated and felt like a failure.
Initially, we put Alexis on soy formula, not realizing she was allergic to soy (but has since outgrown). Though the soy did not cause an immediate reaction, over time it caused her stomach to become irritated and she began to reflux (a condition that occurs when gastric juices or small amounts of food from the stomach flow back into the esophagus and mouth). Most kids spit up with reflux, but she never did so we had no idea damage was being caused.
When Alexis was 5 months old, I tried to give her the first bit of solid food which was a milk- based rice cereal. She immediately spit it up. This was the moment we knew something was truly wrong.
When she was 6 months old, we had our first visit to the Emergency Room. She was having a severe allergic reaction and needed medication. The only thing I had was children’s chewable Benedryl. This medication contains Lactose, which is used as a binder. She began to wheeze as we drove to the E.R. where she was given her first dose of Albutoral, an emergency breathing medicine.
From that moment forward, Alexis was given Albutoral every four hours, day and night for the next 4 months. Although I was in the pediatricians office every week begging for help and at one point asking to see a pulmonologist, the doctor said she was just fine and not to worry. They said she was just getting over what may be RSV.
At just 10 months old, she was breathing so badly I used a humidifier as directed, which I later discovered is not recommended for asthmatics. After a brief session with the humidifier, her condition declined to the point that she needed Albutoral every hour just to get by. By the time my husband got home from his night shift at 5am, Alexis was retracting and gasping for air. We rushed her into the E.R. where they immediately began more aggressive treatment.
At one point we thought she was stabilized and they were about to discharge us when she began to crash. The E.R. called in respiratory STAT and began frantically working on her. She turned blue and her eyes rolled into the back of her head. My husband and I alternated positions next to her while the other stood and watched. There was a hospital staff member standing next to us offering support in case she passed away. I just wanted that person to go away. We couldn’t lose Alexis.
Eventually, the hospital staff was able to stabilize Alexis and she was admitted to the ICU where she went into 24 hour Albutoral treatment. She was there for three days until she was well enough to go the pediatric floor where she spent the next seven days. From there, they ran a gamut of tests. One test required a tube down her nose for a day and another required her to be tied to a board and forced to drink a barium mixture so the staff could x-ray her lungs. She was poked and prodded beyond belief. For the most part, Alexis was a real trooper, but when they tied her to the board for the lung x-ray, she’d had enough. She went into shock and was unresponsive for 4 hours. She just clung to me and wouldn’t even blink.
After all the tests were complete, we were told she had multiple life threatening food allergies and asthma. We were discharged with many medications that had to be given around the clock. We were also told that the reflux caused by the soy formula had given her 5 ulcers on her esophagus. She was only 10 months old.
Upon discharge from the hospital, we found ourselves dealing with the reality of Alexis’ condition. There was no instruction manual to guide our way. At the time, there were very few resources for food allergies. We were left to figure out for ourselves how to keep her alive.
Today, we have learned much over the years. We have learned that she has many more allergies than first discovered in the hospital. We have learned to carefully read the labels of each and every item we put on her plate. We have learned how difficult it is to keep her safe in a world where people generally do not understand life threatening food allergies and the severity of her situation.
To this day we must monitor everything she does, everywhere she goes, and everything she eats. Everyone she comes in contact with must be made aware of her situation and those supervising her must be trained to use the medications we carry with us at all times.
If she ingests one of her allergens and is not given the proper medication, she could go into cardiac arrest or stop breathing and die. The hard part is that each reaction is different so everyone must constantly be on alert.
As a family, we have adjusted to our limitations. We only travel in our trailer and try to stay within minutes of a hospital at all times. We do not fly due to too many complications that could occur.
Grocery shopping takes extra long because I must read the labels on all food items regardless of how many times I have purchased them. Companies change ingredients with no notification. This has happened to me more than once.
We don’t go out to pizza or ice cream and if we visit a restaurant we bring her own food because she can react to cross contamination, even from clean pans that have once contained an allergen.
Giving my child food that contains an allergen is like giving her a loaded gun. I am often asked, “How could food kill?” “Maybe a little is okay?” No, it is not. A little bit could kill her. One day at school a child spit yogurt at her. A small bit landed on her lip and it began to swell. She is that severe.
As parents, my husband and I constantly strive to balance our need to protect her with her need to be able to survive in this world as an independent person. Alexis is very aware of her own situation. She knows she can only eat “safe” foods.
Alexis does attend public school in a district that has gone above and beyond to ensure her safety. They have provided an aide to sit with her at lunchtime so she can eat safely. The entire school staff is aware of her condition and has put in place measures to keep her safe. Unfortunately, unsafe foods will always be around her and will always have the potential to kill her.
When Alexis was in preschool, the teachers gave the class candy treats at Easter time and Alexis was given a pencil. I was devastated that she was singled out like this. My husband suggested that I turn that situation into a positive. So, I created “Sweet Alexis Bakery” egg free, dairy free, tree nut and peanut free treats. These are fresh products that are tasty enough to be enjoyed by the whole family. I bring these baked goods to social gatherings and birthday parties so Alexis can enjoy treats along with her friends.
My goal is to increase awareness and understanding of children with food allergies. My dream is that families affected by life threatening allergies can shop with ease and even take our kids out for a muffin or treat at a local shop or restaurant.
Eventually, I envision the “Alexis Friendly” symbol on all products that are egg free, dairy free, and nut free so shopping and life in general can be made easier for families like ours. Day by day, I am turning something devastating into a positive and that in itself feels really sweet. That is the story of the Sweet Alexis Bakery - thank you for reading!!!