Changing Colors: The Blog of Spectrum Pediatrics

September 19, 2018

Tube Free Superstar: Meet Benji

Benji was born 41 weeks with no complications during pregnancy. Due to umbilical cord asphyxiation and meconium aspiration at birth, he went to the NICU. While there, Benji showed limited interest in eating and an inability to coordinate his suck, swallow, breathe reflex.  He stayed in the NICU for 25 days and transitioned home with an NG tube due to poor weight gain and continued food refusal. While at home, Benji’s parents attempted to feed him the bottle but he continued to be inconsistent. In July 2017, Benji received a G-tube. After having his G-tube placed, Benji’s parents worked hard on his feeding schedule and relationship with the bottle. His skills improved and there were some days that Benji did not need the tube.  Unfortunately,this did not last and Benji became aware of his pump and his oral aversion grew. Although Benji would eat around 2 oz purees with meals, he would gag on any other consistency and he regressed to only being interested in the bottle while drowsy or asleep. Prior to starting the program, Benji was receiving 75% of hydration via G-tube. Due to Benji’s strong aversion to the bottle, all of his bottle feeds were done while he was falling asleep or sleeping.

Benji’s family decided to do a supported tube-wean through Spectrum Pediatrics. Benji’s journey began at 12 months old with the team at Spectrum Pediatrics in his natural home environment in New York. Benji’s pediatrician worked closely with his therapist and family throughout his tube weaning journey. During the hunger induction period, Benji’s overall volume was reduced – allowing him to feel hunger and he began to show more interest in eating.  His parents observed that he seemed more interested in eating and being spoon fed. Benji began exhibiting signal cues for acceptance such as opening his mouth or reaching for the spoon. During the transition between hunger induction and intensive treatment, Benji’s dream feeds were dropped. Although formula was offered through the bottle, as well as other cups, while awake, Benji preferred to drink milk through a straw! During the first few days of intensive treatment, Benji’s interest in various purees and finger foods such as puffs or meltable solids grew tremendously. Benji began to show interest in cups that he saw his caregivers using and would accept a few sips from an open water bottle or cup. Benji’s oral motor skills continued to improve as he began feeding himself crackers and veggie straws, however he still wouldn’t accept the bottle.

Throughout the intensive portion of the program, Benji’s oral intake continued to increase as did his comfort with spoon feeding. Benji started to dip his own crackers or veggie straws into the puree to feed himself! When a straw cup was introduced, Benji required assistance at first, but within a few days, he was able to independently drink milk from his straw cup! Benji was consistently eating fruit and vegetable pouches, along with any type of cheese! We quickly learned that Benji loved mascarpone and ricotta cheese! Benji quickly started to increase his oral intake with liquids and solids and did not require his g-tube for any supplementation after the 8th day of intensive treatment. Over the course of 15 days including hunger induction and intensive treatment, Benji fully transitioned from being 75% dependent on his G-tube to becoming a 100% oral eater! Benji’s therapist and parents worked together to read his cues and identify what he was attempting to communicate as his body learned how to self-regulate. Benji was now able to express when he was hungry and let his parents know when he was full.

Benji has not used his g-tube since May 16th, and it was removed on August 20th! During the follow up period, Benji’s oral motor skills continued to improve as he gained more experience and he is now able to drink water, and  milk from a straw cup! Benji’s ability to recognize hunger and learn how to regulate what his body needs has had a lasting impact on his overall development. Throughout the intensive period, Benji began to crawl and became more confident in his skills. Benji has learned to eat various foods and has started to eat larger pieces of foods such as bread with almond butter or cream cheese, spaghetti, and pancakes. Benji’s mother shared that although Benji likes almost everything, he currently loves blueberries, meatballs and turkey!

We are so proud of Benji and his entire family! Congratulations on being a tube-free superstar!

Photos provided by Benji’s family

August 29, 2018

Feeding Aversion: Is it a skill?

By: Jennifer Berry, OTR/L

Parents of children with feeding disorders are well aware of how dramatic and difficult helping a child overcome a feeding aversion can be.  The most loving parents and the most skilled practitioners are all working towards the same goal. The key to change the dynamic from “working” to “enjoying” family mealtimes is looking feeding aversion as a “skill” and not a “dysfunction”.

As a family begins to embrace the idea that a feeding aversion is a learned skill versus a dysfunction, they can finally begin to be set free from the struggle of unnatural mealtimes.  They can leave behind the institutional and clinical approaches to meals and literally get back to the table.  The kitchen table.

Most children with true feeding aversions have a past that has created a negative and complicated relationship with food. Here are a few examples:

  • They learned to be afraid of food because they didn’t initially have the coordination to manage it comfortably.
  • They learned to be afraid of food because they were aspirating (food going into the lungs rather than into the stomach), and food or liquids put them at risk of choking or having respiratory problems.
  • They had reflux and learned “the more I eat, the more it hurts”.
  • They and their families experienced stressful mealtimes due to pressure and desire for improvement.
  • They learned to fear food or anything near their mouths due to multiple medical procedures.
  • They learned that food was “work” and that they had no control over their bodies in regards to food.

If these things are true, doesn’t it follow that these children SHOULD be aversive to food?  Don’t we want our children to avoid things that hurt them or that they view as dangerous?  Isn’t it our job to discourage our children from eating for external reasons?  Don’t we want our children to listen to their own bodies and feel in control of them?  YES!

Teaching children to have positive relationships with food in which their experiences and fears are honored is the key to unlocking this puzzle.

  1. First, Do No Harm –  We recommend that families end any therapies or activities that they are engaging in that could be confusing the child’s relationship with food or even deteriorating it inadvertently.
  2. Rest in Neutral – Both the child and family should take a break from food “work and “rest” for a brief time in order to decrease stress and turn the new mealtimes strategies into habits.
  3. Mealtime Coaching – We work WITH the family to give real world and at-the-table recommendations about what to do to return meal times to “normal” and decrease the pressure on the child and on every member of the family.  This can involve changing the environment, changing our patterns of speech and volume, what we are saying, and how much attention is placed on food and eating.  During meals we should be relaxed and not feel “on stage”.
  4. Responsive Feeding – We teach families about introducing  new foods and textures in a loving, supportive and natural way that honors the child’s aversion instead of reinforcing it.  The child gives permission, the adults learn to read the child’s cues, and families get back to basics.

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August 29, 2018

The Pressure of Praise: What else can I do?

By: Heidi Liefer Moreland, MS, CCC-SLP, BRS-S, CLC

As a feeding therapist, I always thought that I was being helpful when I “coached” children through their bites, cheered, and “whoo hoo-ed!” for all their eating attempts. I also observed well-meaning parents, grandparents and caregivers cheer, clap, and praise any attempts at eating, but we often did not see a consistent increase in eating as a result.

“‘Positive’ pressure is still pressure and turns many kids off from new foods.” – Katja Rowell, MD

Kids hat have little or negative experiences with food have limited experience with the smells, tastes, and textures of foods, and any new sensation or movement can make them even more anxious.  Attempts to “help,” can actually bring so much pressure to the situation that they have difficulty participating.  What adults may view as positive reinforcement, may actually sound like  “noise” to a child in an already challenging situation. It might also feel like you are taking on different personalities during mealtimes.

Natural reinforcers for eating are satiation of hunger, enjoyment of tastes and textures, and socializing in a relaxed and supportive environment.   Mealtimes are naturally meant to be social.  Nevertheless, the social interaction during mealtimes in families with a child with feeding challenges often becomes unnatural, scripted, and clinical.

Here are a few suggestions on what to do in place of praise during mealtimes:

  1. Remember to talk about things other than food and feeding at meal times. Check out the Family Dinner Project website for some great conversation starters!
  2. Reduce the number of questions you are asking your child.  Mealtimes should not feel like an interrogation.  Imagine a waiter standing over your table asking a bunch of happy questions as you are trying to eat.  No matter how good the food is, the questioning would likely ruin your appetite.
  3. When chatting with your child at mealtimes use a speech pattern, talking volume, and rhythm of speech that is more “Mommy”or “Daddy” and less “Cheerleader” or “Therapist.” Be yourself, and think about how you interact with your child when it isn’t a mealtime.
  4. Read your child’s cues.  If they are telling you they don’t want the spoon, honor it.  Take a pause and set it down nearby.  This gives the child the sense of security that comes with feeling understood and the space to initiate when the child is ready.
  5. Enjoyment is the name of the game.  Children that feel safe and relaxed at the table are more likely to develop healthy eating skills and try again at future sittings.  Quality leads to quantity.
  6. Sometimes, when safe, it is helpful to have a midday “snack” period where your little one is allowed to play with foods without obviously being watched.  Playing with their food is crucial for development and building trust during mealtimes. 
  7. Everything in moderation:  Be careful not to give extra attention or praise to food, but also remember to praise the non-feeding accomplishments of your child. For example, “I love how your sitting” or “Thank you for listening!”

 

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August 6, 2018

Responsive Feeding: Reflection Time

By: Heidi Moreland, MS, CCC-SLP, BCS-S, CLC

It often seems easier to find exact guidelines on how to help your child. Responsive feeding is a great structure, but it can feel like there are a lot of gray areas when it comes to application.

Picture helping your child learn to walk. In the beginning you hold them upright, and even help them move their feet! As they mature in their skills, you progress to holding two hands, holding one hand or, just using a finger. Eventually, you let them walk to your outstretched hands and you catch them if they wobble. Sometimes you need to let them fall in order to allow them to develop their balance independently. Once they are running on the playground by themselves, you will probably forget all of the months of practice and many steps that you went through!

You can apply the same idea to other skills. We created some questions to ask yourself to guide you through the gray areas of the mealtime relationships:


Enjoyment

  1. What does my child think about food (or drinking) right now? How do they communicate this?
  2. What does my child think about family mealtimes right now? How do they communicate this?
  3. Is his or her response to mealtimes different than other areas of structure? (For example, 2 year olds often do not like to be confined, and would rather explore than eat. This does not necessarily mean that he doesn’t like food, but may dislike sitting for more than a few minutes.)

Abilities

  1.  What do they do at about 80% of mealtimes with ____________ ? No one is 100% at anything, especially toddlers and preschoolers, so 80% is a good measure of mastery. This can be any skill, such as drinking from a cup, sitting at the table, using a spoon, or just taking bites without spitting them out. It can also be behaviors, manners, and food challenges like sitting at the table or tasting new foods.
  2. What do I hope they will do at mealtimes?

Shaping rules and expectations

  1. If you do an assessment of their enjoyment and find that there is no enjoyment at all, you may need to back up your expectations until they are more relaxed at mealtimes.
  2. Once you have some enjoyment of food and mealtimes, you can begin adding structure a little bit at a time.

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August 6, 2018

What does “Responsive Feeding” Really Mean?

By: Heidi Moreland, MS, CCC-SLP, BCS-S, CLC

 

Responsive Feeding: Mealtime guidance that depends upon the feeder’s ability to read the eater’s cues in order to make the meal manageable, enjoyable and successful for the eater, without giving up developmentally appropriate structure and expectations.

The mealtime relationship is extremely dynamic and should evolve over time. In the beginning, the parent’s role is more permissive and supportive with food. Children are allowed to explore and branch out. This allows their tentative interests to develop and stabilize. However, we have found that being too permissive can actually lead to pickier eating and more mealtime “stand-offs,” and even impact weight gain. We also know that being too authoritative or involved can lead to refusals and difficulty with self-regulation.

The child should be comfortable with saying “no” to foods if they aren’t hungry or don’t feel safe, without fear of reprisal.

  • Learning that they are loved despite the fact that they said “no” is extremely important. However, it doesn’t mean that they shouldn’t experience the consequences of “no,” such as being hungry.
  • They may show interest or refusal in a variety of ways that will change over time. You will need to pay attention now and as they mature.
  • If the child is consistently refusing, the adult may need to re-consider the environment or expectations, so that they are both appropriate and achievable.

The adult should also be comfortable with saying “no” to behaviors and requests.

  • If the situation isn’t safe, it is always appropriate for you to set limits.
  • As hunger and trust are more established, mealtime expectations should begin to line up with expectations outside of meals. Ask yourself, “what would I do if this wasn’t food?”
  • There are very valuable lessons that children learn from consequences. Protecting them from consequences of “no” by always setting up the situation so the answer is “yes” deprives the children of learning important lessons. For example, getting the child to eat every day by only serving highly preferred foods deprives the child of learning the feeling of hunger, as well as the possibility that some new foods are good.

Just as you wouldn’t expect an infant to drive a car or read a book, you would be disappointed if your teenager waited for you to change their clothes or put food in their mouths. It is appropriate to change your expectations as children mature.

  • If your child is a new or hesitant eater, their abilities with food may look different than their abilities in other areas.
  • Until their trust of food and eating becomes more stable, you may have different sets of expectations for food and for other areas, but it helps to be aware of the discrepancy and make very small steps to make them more similar.
  • If a behavior is new and fragile, it needs more support. Once a behavior is more established, parents and caregivers can begin to shape it or incorporate it into an expectation.
  • Patterns of interest and response will help you make future choices and determine when your child is ready for the next step.

Source 1

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Darling, N., & Steinberg, L. (1993). Parenting style as context: An integrative model. Psychological bulletin, 113(3), 487.

Hughes, S. O., Power, T. G., Fisher, J. O., Mueller, S., & Nicklas, T. A. (2005). Revisiting a neglected construct: parenting styles in a child-feeding context.Appetite, 44(1), 83-92.

Landry, S. H., Smith, K. E., & Swank, P. R. (2006). Responsive parenting: establishing early foundations for social, communication, and independent problem-solving skills. Developmental psychology, 42(4), 627.

August 6, 2018

Responsive Parenting: Why is this important for mealtimes?

By: Heidi Moreland, MS, CCC-SLP, BCS-S, CLC

Every parent has a parenting style which is formed by their own personality, the way their own parents interacted with them, the community in which they live, and how the child’s personality responds and interacts to that style. Their interactions are characterized in part by how they respond to their kids and their views on how to set limits, with some parents leaning more towards being more permissive, others towards being more authoritarian. The truth is that both responsiveness and limits are important.

Responsive Parenting: This includes a balance between being the authority, while still recognizing their children’s cues and responding positively to them. Parents acknowledge the child’s needs and desires, and may provide developmentally appropriate reasons for the rules, but have high expectations for their kids and expect that rules will be followed.

This role evolves over time. When children are infants, the parents’ primary job is to notice the child’s needs by responding promptly. However, in order to mature past the demanding nature of infancy, children need to develop the ability to safely and successfully interact with a changing world independently. This means that parents can’t just respond to the child’s needs and expect them to mature, they must also teach their child to cope with stress and novelty (Landry, Smith, and Swank, 2006) by allowing them opportunities to be independent, even if they struggle a little. This should look different for each child and family, and your expectations should change over time as your child matures, but it will continue to follow the same process.

This style of parenting seems to work well for developing healthy eaters. Most research that looks at parenting style and eating finds that kids of responsive (authoritative) parents are more likely to develop self-regulation, be less picky, and have less food battles than parents of authoritarian or permissive styles.

Sources:

Darling, N., & Steinberg, L. (1993). Parenting style as context: An integrative model. Psychological bulletin, 113(3), 487.

Hughes, S. O., Power, T. G., Fisher, J. O., Mueller, S., & Nicklas, T. A. (2005). Revisiting a neglected construct: parenting styles in a child-feeding context.Appetite, 44(1), 83-92.

Landry, S. H., Smith, K. E., & Swank, P. R. (2006). Responsive parenting: establishing early foundations for social, communication, and independent problem-solving skills. Developmental psychology, 42(4), 627.

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August 6, 2018

Family Mealtimes for Tube-Fed Kids

We have discussed in the past the importance of family mealtimes for all children. This is essential for kids who are tube-fed, but it is often more difficult. Stringent tube-feeding schedules and extended time spent on the tube feeding itself can make sitting down and eating together feel like either an additional chore, or an impossible luxury. Add in a history of stressful mealtimes that feel like failures, and the result is often allowing tube-fed kids to opt out of the family dinner table. Sometimes medical and behavioral complications have disrupted daily routines so much that family mealtimes have never even been attempted. Unfortunately, this results in a crucial missed opportunity on the road to becoming a healthy eater. In addition to the advantages mentioned in our family mealtimes post, kids who are tube-fed benefit by:

  • Being a part of a family routine.
  • Seeing food as enjoyable.
  • Having mealtime expectations that are not just volume or eating related.
  • Being exposed to a variety of foods through sight and smell.
  • Watching parents and siblings eat, which research has shown be the most powerful tool in the development of healthy eating habits.

Even if kids don’t put food in their mouths, there are other measures of success:

  • Helping to prepare food, making it clear that eating is not an expectation. It allows children to feel the pride of contributing and increases food experience.
  • Staying at the table for a certain period of time. Even if it begins at 2 minutes, time at the table can then be extended. If your child shows significant anxiety just with being at the table, this is an even more important step in becoming an eater.
  • Completion of mealtime chores such as helping to set the table, cleaning up the silverware, and helping to pass the serving plates can put the child in proximity to food that doesn’t force eating.
  • Participating in family conversation, even if it begins with one or two responses. Non-food conversation is important for family bonding and for helping the child to become a part of the “eating world” in preparation for becoming an eater themselves.

Talk to your therapist about other ways in which to build up to pleasant mealtimes. Past fears may need to be worked through before any food is part of the equation. If this is frustrating, remember that many families struggle with this, not just families with tube-fed children. If you missed it, check out the resources for family mealtimes here.

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July 31, 2018

Tube-Free Superstar: Meet Declan

Declan was born at term, but he suffered a small stroke before birth, and had the cord wrapped around his neck 2 times during the birth process.  He had difficulties with breathing, and a swallow study showed that he had a discoordinated swallow and couldn’t safely take a bottle.  He got a feeding tube when he was 5 weeks old.

As he got older and stronger, he began taking some purees by spoon, but refused to drink.  He would sometimes take a few pieces of solid foods, like mandarin oranges, but would usually gag and throw up on any pieces.  A swallow study showed that he was still aspirating thin liquids, and his refusal to drink the thicker liquids made practice inconsistent, so he made slow progress.  He was making progress in all areas, but eating lagged behind his other skills.

Declan participated in an intensive wean when he was 10 months old.  During treatment, he became very successful with soft solids, and within a couple of days he was no longer gagging on pieces.  He especially loved brownies, avocados, blueberries and nutrigrain bars.  He lost interest in purees, but began to show some interest in drinking, but he still got congested after drinking thin liquids.  In order to protect his lungs, he got Pedialyte by tube, but was able to take in enough calories from solid foods and purees to get all of his calories by mouth.  Because he was now interested in drinking, he took small sips of thin liquid by cup and the consistent practice helped his swallow improve.  Within a month, he was able to drink all liquids from a sippy cup, including water, juice and milk (although her preferred Ovaltine).  His family slowly reduced the liquids by tube over the next couple of weeks.  Within 2 months of the start of treatment, he was taking all of his food and liquids by mouth and slowly gaining weight without the help of his tube.

Today, Declan is happy and healthy.  His parents report that he “eats like a pig” and the experience with the feeding tube seems like it was a long time ago.  Declan is a great example of the progress kids can make when they are safe, happy and interested and get the opportunity to practice something they enjoy several times a day.  He is definitely an eater, a drinker, and a Tube-Free Superstar!

Photos provided by Declan’s family.

 

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July 3, 2018

Tube-Free Superstar: Meet Lucas

Lucas was born full term and diagnosed with an esophageal atresia and a tracheoesophageal fistula at birth. Lucas underwent surgery following birth for repairs and remained in the NICU for 2 weeks. While in the NICU, Lucas began eating by mouth with some success and he was discharged from the hospital. At home, Lucas began to refuse bottles and his mother described feedings as extremely difficult and stressful. He underwent multiple tests to attempt to find a reason behind the increased vomiting, reflux, and food refusal. When Lucas was 4 months old, he was hospitalized due to dehydration and food refusal. At this time, an NG tube was placed for primary nutrition. His parents report that following the NG tube placement, Lucas did gain weight, although any interest in oral intake decreased. Lucas’ parents reported that following the NG tube placement, Lucas continued to refuse food, despite decreased pressure.

Eating CookieFollowing multiple failed attempts to increase oral feedings via regular feeding therapy, Lucas’ family decided to do a supported tube-wean after learning about the program through their doctor. Lucas’ journey began at 8 months old with the team at Spectrum Pediatrics in his natural home environment in New York. Lucas’ GI doctor worked closely with his therapist throughout his tube weaning journey. During the first day of intensive treatment, Lucas began to show interest in both solid foods and purees. He immediately showed his independent side and started to feed himself! Lucas enjoyed crackers, cheese puffs, and anything his parents were eating. Lucas was so excited to start his tube-free journey that he decided to pull his NG tube out on the first day. His parents and therapists felt confident in Lucas’ overall interest in food and increased oral intake.

Over the course of the next few days, Lucas started to increase his oral intake each day. He quickly learned to love to eat oats for breakfast and wonton soup for dinner! He loved to munch on cookies, puffs, and anything dipped in ricotta cheese. Within the first 4 days of treatment, Lucas learned to love to drink milk from his cup and water or apple juice from his straw cup. He learned how to hold and drink from his straw cup all by himself. It was clear tat Lucas was slowly starting to trust food and build a relationship with his caregiver’s during mealtimes. He began to show signs of hunger and thirst by crying or reaching for food or his cup. He worked very hard to feed himself, drink through different cups, and swallow purees, liquids, and soft solids!

During the follow up period, Lucas was happy during mealtimes with his family. His parents quickly started to recognize his clear cues to request more food or signal he was all done. He learned to eat various foods and became a more competent and confident eater. Lucas loves going out to restaurants with his family, especially when he gets to go to Panera Bread for his favorite, mac and cheese! Throughout the first month of follow up, Lucas’ parents observed that he was starting to eat more consistent meals and have fun during mealtimes! Lucas is continuing to show his independent side, he is learning how to feed himself with a fork and spoon, as well as pick up small pieces from his tray.

We are so proud of Lucas and all the things he has accomplished! Congratulations to Lucas and his entire family for being a tube-free superstar!

Photos provided by Lucas’ family

 

 

 

May 30, 2018

The History of My Eating

By: Evie Morse, Age 11, Feeding Superstar

Most kids can quickly be born and start eating grown up foods, but not me! My mom was very sick. The doctor demanded that she should have me now, and she’d survive. It was the only way. So I was born early, but it was worth it! I had trouble eating because of when I was born—on June 4, by the way. I had to eat by using a thing in my belly called a G-tube. (I don’t know what the G is for, just so you know.) When it was time to take the G-tube out, I did not want to. But somehow I was convinced to take it out anyway. But I still wanted something in that spot! Sure, it did not hurt to take the G-tube out but my parents suggested to put a bandaid in its place. We took the bandaid off more and more every day, so when it was time to take it off for good, I was less worried about it.

My parents took me to eating places all over the country that tried to teach me to eat. I started off with small food, but even that was hard for me. So one day, my parents took me on vacation to Virginia. In Virginia, there was a nice eating teacher named Brianna. Brianna suggested that it did not matter if I could learn to chew and swallow. All that mattered was if I liked the food. For the next ten days, we spent time in our apartment in Virginia, with Brianna coming for each meal.

After ten days, I was better at eating. I got the hang of chewing and swallowing. I could eat solid food, but at school I had the same meal: blended up vegetables and yoghurt. So when I told my parents that I was ready to eat solid foods at school, too, they gave me notes that said what my new food was.

My favorite saying is “What are we havin’?” (said in a southern accent) when I come down from my room for lunch or dinner. My breakfast routine is fun, too, on the weekend. On school days, I have to get up and hurry to the van to my school. I hate being rushed. I eat oatmeal for breakfast and rush on school days.

But on weekends, I’m much happier. The day starts off lazy, and so do my parents. I watch videos with the sound down while my lazy parents sleep. And then what do we have for breakfast when my parents wake up? Oatmeal. Because there’s more time, I can chillax and drink my juice and milk upstairs on the bed. I drink out of a plastic bottle called a squeeze bottle. A squeeze bottle is a plastic bottle that is squeezable. You put a blue top with a hole in it on the opening in the bottle. Then put a straw in the hole. When I squeeze the bottle, the liquid in the bottle goes up the straw and into my mouth. That is, unless there’s a hole in the straw! Can you guess what happens then? Yep. It spills everywhere.

I can eat bread, too. I can eat sandwiches, hamburgers, and hot dogs. I love spicy food too, like Thai food. So can you even believe that I used to have to eat with that G-tube? I’m so glad I can now experience the tastes of things. So, parents, if you have a kid struggling to eat, have them read this story. You could even go to Virginia to visit Brianna!