From the Beginning

He'll grow out of it.  Don't become a short order cook.  Give him less milk, then he'll eat more food. He's just picky.

These are examples of the well-meaning advice we've heard from friends and family over the last 3.5 years with Cody.  But in my heart, I've always known there was an issue deeper than Facebook advice could touch.

Cody was born on June 7, 2015 by emergency c-section after a failed induction.  I was 36 weeks and 5 days along.  My blood pressure had become a problem earlier in my pregnancy and after 2 weeks bedrest, it was creeping back up and it was time for Cody to be delivered.  He spent a few days in the NICU for low blood sugar and jaundice.  Having a baby in the NICU was not a surprise.  As a Type 1 diabetic, I almost assumed he would have issues regulating his blood sugar when he was born.  But after we brought Cody home, he progressed just like any other baby.  He was happy, playful, smart, and had no real issues that we could tell.  He loved his bottles and we started rice cereal as soon as the doctor said we could.  He ate the baby food we offered- yummy bananas and yucky green beans.  We progressed from stage 1 food to stage 2 with no problem.  He was not particularly interested in what we had on our plates, though, and when we tried stage 3 foods he spit out every chunk.  I don't remember specifics really, but I was anxious about his eating before we went to the beach in July 2016.  We came home from that trip and I thought we had really turned a corner when I got Cody to take a bite of spaghettios.  He was just over a year old at that time.  And that's probably the last "new" thing Cody ever allowed in his mouth.

His foods were and still are applesauce (pouches and cups), Plum Organic pumpkin and banana teething wafers, garden tomato flavored Gerber crunchies, pink or purple colored yogurt (Monkey Yogurt in a pouch or Paw Patrol yogurt in a cup), and bananas (a real food!!).  There have been very minor changes along the way.  After starting occupational therapy in April 2018, he tried green (pear flavored) applesauce, but then he eliminated regular applesauce.  So now he eats "applesauce in a cup with green in it."  He used to eat some strawberry banana yogurt pouches made by Gerber, but they changed the packaging from yellow to blue and he refused them after the change.

His bananas must be cut into large chunks.  He will not eat the ends or any bites with bruises.  His cookies cannot be broken.  His crunchies also cannot be broken or too small.  He drinks apple juice mixed with water from an Avent soft spout cup during the day and milk from the same kind of cup at night.  These are his only beverages and only way he will drink.  Nope.  No water, soft drinks, milkshakes, or Pediasure.  No open cups. No straws.

So at this point, I guess some of you are probably wondering what kind of parents we could possibly be to allow this to go on in our home.  We tried force-feeding.  We tried offering new things. We tried to trick him. We tried everything.  The gagging was terrifying and the tantrums were unbearable. We told the pediatrician and were told he would grow out of it and to just keep offering foods.  Finally at his 2 year old appointment they listened and said if he's not eating by Christmas, we'll refer him for therapy.  I could have told them right there that second that he wasn't going to be eating by Christmas, but I waited.  Finally in April he started seeing an occupational therapist who immedately diagnosed him with Sensory Processing Disorder.  You better believe Dr. Google and I had already diagnosed him with that, so it came as no surprise. I had a second diagnosis in mind- ARFID (Avoidant/Restrictive Food Intake Disorder) and a joined a facebook group of parents with kids suffering from ARFID.  I knew ARFID was a new and more unusual diagnosis so I didn't push it when it wasn't brought up at therapy or regular doctor appointments.  

Our occupational therapist conferenced with our pediatrician and decided to send a referral to Marcus Autism Center in Atlanta for autism concerns.  We got on a wait list for an autism evaluation.  I talked to Marcus about my concerns about Cody eating and they suggested sending in a separate referral for feeding concerns to help him get into their Intensive Feeding Program.  I jumped on that and within days we received a call from the feeding program.  We knew the process would be slow at Marcus.  It's a prestigious program with a wait list of 6 months- 2 years we heard.  In October, the week of Hurricane Michael, we were asked to bring Cody for a physical at the Center for Advanced Pediatrics in Atlanta (part of Children's Healthcare of Atlanta). The next call was in December and we scheduled a team evaluation.  On December 12th, my mom and I took Cody to the Marcus Center for a 3 hour evaluation with a nutritionist, a speech therapist, and a psychologist.  I won't go into detail, but the result of that appointment was Cody being recommended for Intensive Day Treatment at the Marcus Autism Center.  He also got a new diagnosis- ARFID! (Guess they should have consulted Dr. Mommy). Cody was added to the wait list for the feeding program.  I thought we might hear from them sometime in the Spring or Summer, so you can imagine how surprised I was 2.5 weeks ago when they asked for Cody to begin treatment on February 7th.  It has been a whirlwind since then.  Buying a new car, writing 8 weeks of sub lesson plans, packing our home, finding a place to live for 2 months in Atlanta... all the while trying to live and soak up all the time I could at home with my family (especially baby Cole). 


As you can imagine, all of this is incredibly hard to deal with on an everyday basis.  We buy crunchies in bulk from amazon.  We must take Cody acceptable food with us if we eat out of our home, which we rarely do with Cody.  He does not like to be around or smell other food, so going out to eat is almost out of the question. Maybe the hardest part of Cody's ARFID is that food is not just nutritional, it's a part of our culture. What I wish for is to be able to take Cody out for icecream after a long week at school. To cook his favorite meal when he's feeling sad.  To take he and Cole for Happy Meals to celebrate an achievement.  To see him eat his birthday cake and not just blow out the candles.  To see him enjoy snack time with his friends at school and church. Facebook can be difficult, because every picture of a toddler enjoying their birthday cake sparks jealousy in me.  Friends post pictures of their children eating hotdogs, pizza, candy, cookies, and of course complain about their terrible diets.  I would cry happy tears if Cody ever ate any of those things. 

So here we are.  Tonight is the first night of our "new normal."  Tomorrow morning at 8 AM we begin treatment at Marcus.  We will be here for 6-8 weeks.  In the end I hope I can say that Cody eats more than 5 foods. I hope he drinks water.  I hope he drinks from a regular cup.  I hope I have more options to pack in his lunchbox. I will be posting as often as I can about his therapy at Marcus.  I hope you'll follow along and keep Cody in your prayers.