Without a Crystal Ball

Our Journey through Chronic Illness

Every one eats. Every single person needs to eat to survive. It is one of the very basic necessities of any human on this planet. Without food your body would break down and eventually die from starvation. Many of us enjoy food, and we explore so many different types of foods and textures. Most social gatherings are centered around food. Nearly every time we are invited to a party the center of the event is food and beverage related. My husband and I LOVE to eat and a good dinner party is a favorite past time. However, our lives have taken a dramatic turn. Our 3.5 year old son has a condition called Oral Apraxia. It means his brain is firing signals to his mouth to chew, grind, swallow and move the tongue from side to side and his mouth is not responding. Over the past 2.5 years that he has been eating solids, we have made very little progress in the foods he can tolerate and chew effectively. As his mother it makes me sad because he sees kids eating foods, and I can tell he has interest in the foods but he knows he can’t eat them. Here are a few ways our lives are complicated by Oral Apraxia

Birthdays

Every single child looks at their party with fondness and excitement for their cake. Most kids have an idea of the flavors they want and they indulge in the amazing tastes of the cake.  Von has never once been interested in a cake. He’s cried at the attempts to feed him the cake, and the frosting if too thick makes him gag. He can’t chew the cake enough to swallow, and the cake ends up in a pile on the side of his mouth. We eventually have to pull the bolus of food out of his cheek after the meal.

Bar-b-ques

Those tasty hot dogs that every single child adores and loves make Von gag and vomit. While most families can relax and enjoy themselves at these events, I’m generally chasing Von away from the table of food and hoping no one offers him something he will choke on. Last summer an unassuming woman offered Von a carrot stick. Most children would do fine with these. For Von though, he can’t grind his jaw to effectively chew any hard vegetables. He’s choked on carrots a few times when we have tried them, and they are now deemed an unsafe food for him by his therapist. It was awkward because I had to kindly ask the woman to not offer my son food. She looked at me and said, “He can’t eat carrots?” I responded and said, “He can’t eat any raw vegetables.” It’s hard because it’s natural for us to help children eat, and most kids WANT to eat these foods. Unfortunately, Von’s brain and mouth don’t work together.

Dining Out

While most families sit together at restaurants, I look around and see the cute toddlers nibbling on their grilled cheese, mac and cheese or their chicken tenders. I watch the parents enjoy conversation with their children and partners. We have never had that experience. While we are out, we have to finely cut up all of Von’s food so little that chewing is minimal. Then we have to sop it up with a sauce so the food is moist enough to dissolve. Finally, we have to give him an iPad to watch so he doesn’t have to concentrate on eating. When we can make eating a passive activity, he is able to chew with greater ease. Patrons often watch us and we have been given more than enough stares because we spoon feed every bite to our 3.5 year old.

Holidays

We have hosted our fair share of holidays and it’s a very different experience for us. While we watch our friends and family relax and enjoy their time, we are trying to not only stuff our own faces, but we are also feeding Von every single bite. Holidays are really, really stressful for me. I have to try to figure out the timing for Von’s meals because I know it will take him up to an hour to finish. Generally, we have to feed Von ahead of time so he has the time to effectively chew and finish his meal. He rarely gets to sit and enjoy the experience the rest of the family does due to the Oral Apraxia.

Daily Meals

I know most parents don’t get to truly enjoy a warm meal when they have young children. However, I have spent more time sitting at my dining room table since Von was born than I have in my entire life. Every single day, we sit at our table for over an hour for each meal. Meal time is stressful in this house. Not only is chewing hard for Von, but he’s also very adverse to spoons and objects going in to his mouth. I often have to feed him with my hands not a spoon. Each day by dinner time, I am exhausted of sitting at the table. I stress out about the amount of food he is actually digesting, and I worry about this overall growth.

Growth

When your child struggles to eat, weight gain and height are hard to come by. I am never able to relax about his growth because his eating and calorie intake is so inconsistent. We will go from periods of great growth over a period of months, and the very next appointment he will have lost weight and is falling on percentiles on his growth chart. Each and every trick we have tried given to us by the dietitians and doctors on his team. It never becomes easy. As a mom, the one thing I can do for my child is feed him, and when he isn’t growing and eating I feel like a failure. When your child has been diagnosed as Failure to Thrive, it is hard to remove the meaning of that diagnosis behind it. Even though today he is no longer considered Failure to Thrive, I know we are a few bad weeks of eating away from that diagnosis. It’s a difficult reality to face.

My hope is that this has given you a better understanding of anyone dealing with feeding issues. This is something that effects families to the very basic levels, and it makes social interactions more stressful. We hope with continued therapy he will improve, but we realize this will be a long road.

We want to know:

How do you cope with feeding challenges? What strategies have you tried to improve caloric intake?

 

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2 thoughts on “How Oral Apraxia has Complicated our Lives

  1. Gretchen says:

    Wow could I relate to this. It’s exhausting.

    Like

  2. Alejandra Sánchez says:

    Hi! I’m from México and I have a 25 weekeer, now 18 months old. I can completely relate to this. It has been a struggle to feed her proprerly. She is taking a special kind of liquid food that’s called INCAPARINA. It’s super caloric and with lots of vitamins, protein and nutrients. I have to buy it in another country because it’s not sold in México. That has helped my baby a lot. Even though, the weight gain is always a challenge for us.

    Like

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