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Picky Eaters vs. Problem Feeders

In last week’s blog, I discussed some simple tips that my family has been using the last couple months to get us out of a boring dinner rut. But what if you really do have a picky eater? In the therapy world, there is the distinction between a “picky eater” and a “problem feeder.”

Picky eater: This is probably what many of us were like as kids. Picky eaters often reject vegetables and solid meats (ham, steak, chicken breasts). They also have a short list of preferred foods (pizza, hamburgers, PB & J, French fries, grilled cheese, chicken nuggets). Picky eaters, will often pout and complain if you put a new food on their plate. They will occasionally touch, smell, or tiny taste it, but generally don’t have a complete melt down when a new food is presented. And finally, picky eaters will eat 30 or more foods in their food range – which is the range of foods a child will eat when you add up all snacks, breakfast, lunch, and dinner combined.

Problem feeder:  This is a much trickier child. Problem feeders will not just reject meats and veggies, but much larger categories of food such as nothing sticky, no fruits or veggies of any kind, or nothing cold, and only eat crunchy. The foods that problem feeders WILL eat become tricky and very specific as well, such as only “Kraft Easy Mac” and not “Kraft Macaroni & Cheese” made from the box. Or only Aldi’s apple juice, and not Motts Apple juice. When a new food is presented, or a known food presented in a slightly different way, problem feeders often “fall apart” and begin to cry and tantrum at the sight of the new or altered food even being on the plate. In fact, some problem feeders will begin to gag at even the smell of a new food. And finally, problem feeders typically have less than 20 foods in their food range.

In general, “picky eating” is something that can be addressed at home, under the general guidance of your pediatrician. However, “problem feeding” is much more serious. Problem feeding requires a multidisciplinary approach between the family, the pediatrician, a feeding therapist (generally an OT or ST), and sometimes even a registered dietician.

However, whether you have a picky eater or a problem feeder, here are some tips that your family can try from a few of our TEAM Feeding experts, Connie Clark (ST), Allison Schmitz (OT), and Amy Love-Smith (ST).

1. Don’t give up. Keep presenting foods over and over again. Kids are finicky. Kids are temperamental. Don’t assume a child doesn’t like something just because it is rejected one time. You never know when a child will change his/her mind. It can take 30+ presentations of a new food for a child to become comfortable with it. (By the way – it took me 33 years of trying to learn to like oatmeal!)
2. Go small.Small portions, small bites, and only 3 different foods on the plate at a time. A couple tablespoons of a food is a big enough portion. The child can always ask for more. And in the principals of Food Chaining, there is value in the “mouse nibble” of trying a new food. Quite frankly, even kissing or licking a new food is a start.
3. Forget the veggies.We know grandmas everywhere will cringe at this one, but veggies are an acquired taste. Focus on adding variety to fruit choices and to the overall diet first. Then, tackle veggies once the overall diet has improved. Is the diet already good except for veggies? Congratulations! Your kiddo really isn’t that picky – just being a kid. Keep placing that tiny tablespoon of green stuff on the plate, and call it a truce.
4. Be a family.Study after study has shown us that family meal time is one of the biggest factors for raising healthy, happy, successful children. Focus on the child being at the table as a member of the family, and being exposed to the culture, values, and food of the family. And… the child needs to witness that other members of the family eat and enjoy a variety of foods. If the child routinely sees his brother eating veggies, and notices that brother doesn’t keel over and die, then the child is more likely to try veggies. However, if daddy picks all of the broccoli out of the pasta dish and refuses to eat it, you have a much smaller chance of the child trying broccoli. If you won’t/don’t eat it, neither will your child!
5. Play with your food.Pretend cook. Have tea parties. Use real food for art projects. Make food fun! All of this exposure to food when there is NO pressure to eat can make a child much more comfortable with an undesired food when it comes time for meals.
6. Use language.Help the child use describing words for food. This teaches him/her about the various tastes/textures and helps the child to draw similarities between foods they like and other foods by incorporating language. Example:  “Yum… cheese pizza! It has tomato sauce on it. What else is made from tomatoes? Salsa, ketchup, spaghetti sauce?”
7. Do not negotiate.Dinner time should not be a time for arguments. Go ahead, place a non-preferred food on the plate. If needed, and the child is ready for it, set a clear expectation of a REASONABLE about of smelling/tasting of the new food that is required of the child. And then stop the negotiations. Many children love the power battle back and forth at meal times. Disengage. Change the subject. Make polite dinner conversation.

Once again, these are simple tips to be tried at home, grandma’s house, school, etc. These are appropriate for “picky eaters.” If you feel that you have a “problem feeder,” and these tips are not working, get help! Talk to your child’s pediatrician, speech therapist, or occupational therapist and find out what can be done to make meal time more successful.

Resources:
The Star Institute for Sensory Processing Disorders: Picky Eaters vs Problem Feeders (Downloaded November 2016)
Children’s Therapy TEAM Blog, Melissa Foster, Dinner Diversity, November 28, 2016.

Buttons and Zippers

Dear Melissa, 
Now that colder temperatures are hitting, I am noticing that my 7 year old son has great difficulty buttoning and zipping his coat. Do you have any suggestions?  

It’s easy to forget about dressing skills in the carefree days of summer. Pull on comfy shorts, t-shirts, flip flops… All easy-peasy. But it seems that every year, as the layers begin to pile on, we are suddenly hit with, “Oh yeah… I forgot that Johnny can’t fasten his jeans, zip up his hoodie, tie his shoes, or button his coat.” Well, never fear, OT’s can help with all of these things!

I am an OT/mama who tends to focus on easy on/off clothes for my clients and my own kiddos. For fastening buttons and zippers I'm turning to my fellow Children's Therapy TEAM OT's Allison Schmitz and Cody Stoops for some fun ways on how to improve your child’s buttoning/zipping skills.

• First, start with splinter skills of bilateral fine motor coordination. These skills can be improved with many fun and crafty activities such as stringing beads, lacing boards, cutting with scissors, etc.

• Strength is important, too! Most fasteners require strength AND dexterity. Coloring, sidewalk chalk, clothespins, Play-Doh, Theraputty, tongs… All of these activities will help your child gain finger strength, which ultimately will make these fasteners easier.

• Practice, practice, practice. Many fun OT/mama/crafty sites have loads of buttoning/zipping activities. Generally, these tasks start with large buttons, which are at tabletop level so that the child can be successful at this level before moving on to trickier buttons on the coat or jeans. Some examples of these include:

Practice unbuttoning first  Unbuttoning is much easier than buttoning. Unbuttoning is basically pulling the fabric apart, with a twist!

Buttoning food  This involves large buttons attached to a felt base piece, and then top pieces having button holes in order to create various “snacks.” Excellent ideas for these crafts include making cookies, pizzas, or sandwiches. Directions for how to make your own “button sandwich” can be found here.

Buttoning/zipping dolls  Many young children like to play with dolls or stuffed animals, and there are a wide variety of dolls and animals available that have fasteners attached. Therefore, it wouldn’t really be “practice” but “play.” Find an example for these dolls here.

Buttoning boards/vests  No-frills. Simple. Classic. An example of these can be found here.

Make your own button strip  Simply sew a large button to the end of a ribbon. Then take pieces of felt with a button-hole-sized slits cut in them, and “string” these pieces of felt onto the button ribbon string. Have I not explained myself very well? Find the directions for this task here.

Find sturdy fasteners  I am NOT one who likes to spend a lot of money on kids’ clothing. They are kids! They should run, jump, play, get dirty, and NOT worry about their clothes getting ruined. I am all for some cheap Walmart, or Target clothes. However, I have noticed that in years past, when I have opted for the cheaper heavy coat, the zipper tends to wear out well before winter is over. Therefore, no matter where you choose to buy your child’s coat, test out the zipper a few times yourself to make sure that it is good and sturdy, and will not “catch.” If the zipper is nice and smooth for you, it has a much better chance of being smooth for your kiddo.

Go big or go home  We all know that it can be a bit tough to button our pants after Thanksgiving dinner! Same for our kiddos. Buy pants or coats a bit on the loose side to allow your kiddo a bit more room for finger dexterity.

Know when to step in  It is perfectly OK to step in and help sometimes. Ladies, don’t we try to get help with our back zippers when we can? Therefore, it is perfectly fine to insist that your child make at least a valiant effort on certain items of clothing, but go ahead and step in when you know that those overall buttons are a bit snug and tricky.

Want more ideas? Check out these additional websites below!
Sugar Aunts: Teaching kids how to button the fun way (accessed November 2016)
Therapy Street for Kids: Self help skills (accessed November 2016)
Mama OT: How to use a button snake for fine motor development (accessed November 2016)

Celebrating Abilities - Down Syndrome Awareness Month

During the month of October, we celebrate people with Down syndrome and help others become more aware of their abilities and accomplishments. It’s not about focusing on disabilities, it’s about celebrating abilities. 

To gain a parenting perspective on Down syndrome, we turned to TEAM parents, James and Stephanie Mertz, to discuss their family’s story. James and Stephanie have two biological children who do not have Down syndrome, and two adopted children with Down syndrome.

Melissa:  What made you choose to adopt children with Down syndrome, rather than "typical children"?
Stephanie:  We had always felt open to adoption. With our first two pregnancies, prenatal testing showed a higher risk for Down syndrome. We just felt that was God’s way of preparing us for our life to come. I was also teaching in Special Education at the time, working with children of differing abilities. After our oldest two kids were born, we looked into adoption and just really felt God leading us to adopt kids with Down syndrome. We found a wonderful agency through a chain of events and were able to adopt both of our boys with Down syndrome through Spence-Chapin in New York.

Melissa:  How is parenting a child with Down syndrome the same as parenting your "typical children," and how is it different?
Stephanie:  We have 2 older biological children who do not have Down syndrome. You would think they would be easier to parent than our two children with Down syndrome. This is not always the case. Our kids who do not have Down syndrome can be just as difficult to parent. They are currently teenagers and have minds of their own. 

Raising two kids with Down syndrome certainly has it’s challenges. Most of the time, especially when they were very little, I didn’t think of them as different unless we went somewhere like maybe the park. Other kids were running and playing, whereas mine weren’t very mobile yet, even though they were the same age or older than the kids playing at the park. I honestly don’t think of them as having a disability until a challenge arises that prevents them from doing something like their same-age peers. They are children just like everyone else. They laugh, cry, reach milestones, throw fits, etc., just like all other kids do. The Down syndrome part is secondary to who they are. When I notice the differences between them and their peers, it’s things like meeting a milestone, but in a completely different time frame than other kids do. For example, a phase that a typical child goes through in 6 months may last a couple of years in a child with Down syndrome. They throw fits, just like their peers do. The difference is that it’s my 10 year old throwing that fit in the doctor’s office, not a 2 year old. 

You sometimes have to get creative when it comes to helping them understand what it is you want or need them to do. You have to remember that just because they are 10 doesn’t mean they are going to act like your typical 10 year old. However, you also can’t treat them like the 3-4 year old they may be acting or thinking like. There is a fine line between parenting them respectfully (due to the fact that they are older than they act) and parenting them at their developmental age. There are other challenges when their chronological age is greater than their developmental age, like a seven year old who isn’t potty trained is much more challenging to deal with than a much smaller child.

Melissa:  In your opinion, what are the benefits/joys/gifts of having a child with Down syndrome?
Stephanie:  There are so many joys in raising a child with Down syndrome. The greatest thing is that they see life through the eyes of a child for so long, whereas the rest of us “grow up” and become hardened to the world. There is also nothing like the sound of our boys’ genuine laughter of pure joy. I have also found, as have many of our friends and family, that through the boys, we have learned to appreciate so much more in life. We appreciate the seemingly small achievements that are such big achievements for them, like being able to tie our shoes. Seeing how others relate to the boys is also very rewarding. Our boys seem to bring out the best in people and have touched so many lives. 

A special thanks to James and Stephanie Mertz for their wonderful insight into the special challenges and joys of parenting children with Down syndrome! 
Down syndrome (DS), also called Trisomy 21, is a condition in which extra genetic material causes delays in how a child develops, both mentally and physically. (kidshealth.org)

• DS can present with a wide range of developmental delays and health problems, from very mild to more severe. Some of the ways Down syndrome can affect individuals include:
  • Low muscle tone
  • Intellectual delays
  • Slower growth rate
  • Heart defects
  • Hearing and vision difficulties
  • Spinal instability

• 1 in every 691 babies in the US are born with Down syndrome – About 6,000 per year (www.ndss.org)

• There are approximately 400,000 people currently living with Down syndrome in the United States (www.ndss.org)

Resources: 
National Down Syndrome Society
Kidshealth.org – Down Syndrome

Halloween Handouts... of the Non-Sugary Variety

Halloween is coming! If your kids are anything like mine, they have been dreaming about their costumes for weeks already! I am very fortunate to live in a large neighborhood that is FANTASTIC for trick-or-treaters. Therefore, I have around 200 little pumpkins and goblins knocking on my door each year happy to receive my Halloween handouts. I love Halloween, but I am not a fan of all of the candy that is consumed. PLUS, so many children have allergies to peanuts, gluten, milk, red dye, etc., that it is really too much to keep up. There is even the “Teal Pumpkin Project” to raise awareness of food allergies and to help encourage non-food treats! 

Every year, for over a decade, I have handed out a mixture of food and non-food treats so that both the chocolate-lovers, and the candy-avoiders can be accommodated. My husband always cringes and says that our house will get “egged” with handing out trinkets instead of treats, but I am always surprised that the kids seem to really like the novelty of receiving a non-food item. SO, this year, I am going all in, and I will NOT buy any candy to pass out. However, I am scouring the stores and the internet to find the coolest, most cost-effective trinkets for my cauldron. Here is what I have found:  

• Glow sticks/bracelets/necklaces:  I handed out glow bracelets last year, and these are #1 on my list this year. The kiddos LOVED them, and I also like that they keep the little monsters highly visible to any passing cars. Wal-mart, Target, and Oriental Trading Company have glow bracelets for under 20 cents a piece if you buy in bulk. I actually bought mine at Wal-mart and got 100 bracelets for $10. And, they are so cool, that I have never had a child complain at just receiving one.  

• Glow-in-the-dark items:  Its Halloween, its dark, and glow-in-the-dark items are fantastically spooky. Oriental Trading Company, as well as Amazon, have a variety of glow-in-the-dark items for only pennies a piece. I picked up glow-in-the-dark bouncy balls and glow-in-the-dark bugs for my hand out basket!

• Pencils/erasers:  Helllloooo! I'm an OT! I work on handwriting! I am always shocked when the kids actually say “cool, a pencil,” but they really do say it! Again, these can be found in stores or online for under a dime a piece, and yes, of course, pencils will be in my hand out basket this year!  

• Bouncy Balls:  I can't stand these things, but my children love them. They bounce all over the house and knock things over, and make a mess. But they are not staying at MY house, are they? I am causing headaches for other parents! These can be found at stores or online for a few cents a piece.  

• Stickers:  I always give out stickers, and they will be in my shopping cart again this year. They are perfect for the toddlers who might choke on candy but love the immediate gratification of getting a sticker on their hand when they come to my door.  

• Mardi Gras beads:  Talk about cheap! You can get dozens of these things for only a few dollars. Halloween is a time to dress up in crazy costumes! More is better! Help your guests add some pizzazz to their costumes! 

• Crazy straws:  I got this idea from a fellow OT and loved it! The kids can use the straws right away, as they hopefully drink something semi-healthy with all of that candy. AND… As you will remember from past blogs, oral input (including sucking & blowing) is calming. Way to help out your fellow parents by calming down the wild little monsters and goblins!

• Mini bottles of water:  OK… maybe a little bit lame, but practical. Halloween costumes tend to be geared toward cooler weather. But, the past few Halloweens here in Arkansas have been quite warm. The costume-laden kiddos who have knocked on my door have been dripping with sweat! Yes, bottled water is a bit boring. However, it does allow for continued trick-or-treating fun without taking a break to find refreshment.  

Also… Recycle, recycle, recycle! I am not a total Scrooge - I love chocolate as much or more than the next person, but there is simply WAY too much candy at Halloween. Don’t throw it away; put it to good use:

• Re-gift:  After your own children take a trip around the block, have them pick out a few of their favorite pieces of candy. Then dump the non-preferred candy items in your own hand out bucket, and re-gift that candy to the neighborhood kids. Again, I get around 200 trick-or-treaters at our house, and it definitely cuts down on the amount of candy I buy.

• Buy-back programs:  Many doctors’ and dentists’ offices will buy back your child’s candy. Your child gets a couple of bucks, and the candy is sent to soldiers overseas. Get more details in the resources section below.  

We still have a couple of weeks until the big day, when I will have 200 monsters knocking on my door! Please share any additional non-food treat ideas you may have!

Resources:
Food Allergy Research & Education (FARE)
Wal-mart
Target
Oriental Trading Company
Amazon
Halloween Candy Buy Back

Tabitha Mayberry: Living Life with Spinal Cord Injury to the Fullest

Did you know that September is Spinal Cord Injury Awareness Month? I know I am a tiny bit late, but better late than never, right? I actually didn’t know that September was Spinal Cord Injury Awareness Month until I stumbled upon an article that TEAM speech therapist, Tabitha Mayberry, shared on Facebook. It was an article in the in the Huffington Post about living life with paralysis.

Since the fabulous Ms. Tabitha Mayberry shared the article that informed me of SCI Awareness Month, I decided to ask her to share a bit of her story on living life with paralysis. (Cool tidbit of information:  Tabitha is the reigning Ms. Wheelchair Arkansas. You can read more from my Ms. Wheelchair Arkansas Q&A interview with her here.)

Tabitha’s Story

I was 21 years old when I sustained a spinal cord injury in a car accident. When I was first injured, I fought diligently for the longest time to walk, mostly to satisfy my family. I attended regularly scheduled therapy sessions. After approximately 18 months, however, my insurance company decided to cease payment for therapy. Despite the progress I had made, it was not enough to warrant continued services, according to the insurance company.

I shared with my rugby coach my desire to use an AutoAmbulator. This is a treadmill device to help patients train to walk and learn gait patterns. It was not available in Arkansas at the time. Some dear friends of mine, including my college rugby coach, decided to make their very own version of the AutoAmbulator. They completed the task with an old treadmill, a harness, some 2x4s and their own strength. For an hour every day throughout the entire summer, we would gather in my rugby coach’s garage where they hooked me up to a harness and took turns moving my legs for me while we laughed, sang, and truly enjoyed each other’s company. However, once the summer was complete and my right leg consistently began to swell, we had to make the tough decision to stop.  

You see, my spinal cord injury may have been an accident, but I am much stronger now. I am grateful for the human I am today. I have become a firm believer that things in life happen for a reason. A reason we may never know, but a reason nonetheless.  In order to make an attempt at receiving additional therapies, I decided to try KAFO (knee, ankle, foot orthotic) braces. This allowed me to receive 6 more months of treatment. Anything to continue therapy. I set a goal to walk across the stage at graduation to receive my Bachelor’s Degree. I completed the goal and obtained a standing ovation during the ceremony. It was one of the proudest moments of my life. It was a moment in my life that changed me – a moment when I realized we can accomplish anything we set our minds and hearts to do. After that moment, therapy was no longer an option. I made the decision to stop focusing on the desire to walk again, and instead, focus on living. Really living.  

Want more information on truly living life with a spinal cord injury? Check out our links below a few statistics on Spinal Cord Injury (SCI) in the United States, obtained from the National Spinal CordInjury Statistical Center. All of these numbers are listed as “approximate.”  Since my injury, I have sky-dived from an airplane, been to the beach several times, become a Speech-Language Pathologist, purchased a home, attended professional rugby matches, attended many concerts, traveled to Guatamala to serve orphans with disabilities (through TEAMworks), survived a second back surgery, and much, much more. These things I could never have imagined when I first woke up in that hospital bed on June 6, 2005. And for that, I am extremely proud of myself. I can only hope to inspire others around me and to let them know that limits do not exist.  

• 17,000 individuals sustain a new spinal cord injury in the US each year
• 282,000 people in the US currently living with a SCI  
• Males account for 80% of new SCI cases each year  
• 38% of new injuries are caused by car accidents, while an additional 30% of new injuries are the result of falls  

An Interview with Ms. Wheelchair Arkansas!, Children’s Therapy TEAM Blog, May 2016
The Precious Commodity of Time: Taking a Second Look at the Effects of Paralysis,The Huffington Post, November 9, 2014
Spinal Cord Injury (SCI) Facts and Figures at a Glance, National Spinal Cord Injury Statistical Center, accessed September, 2016
United Spinal Association, accessed September, 2016

Melissa Foster is the leading contributor to Children’s Therapy TEAM’s Weekly Blog. She is a Pediatric Occupational Therapist with over a decade of experience in the field. An active public advocate in the NWA community, Melissa addresses topics related to Autism, Sensory Processing Disorder and general health and child development.

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Children’s Therapy TEAM believes that every child who may benefit from therapy should be able to access it… PERIOD. We feel strongly about it. That’s why we offer financial assistance to families at every income level, even those with insurance, if the cost of treatment creates a hardship. Therapy may even be provided at no charge, depending on a family’s level of need. Please don’t hesitate to contact our Family Support TEAM to learn more about options. Every child deserves the best we can give!

TEAM Mom's Perspective on Pediatric Cancer

September is Pediatric Cancer Awareness Month. In the United States in 2016, an estimated 10,380 new cases of cancer will be diagnosed among children from birth to 14 years, and about 1,250 children are expected to die from the disease. Although pediatric cancer death rates have declined by nearly 70 percent over the past four decades, cancer remains the leading cause of death from disease among children. This week, TEAM parent, Megan Rutledge, shares her son Drake’s story.  

Megan:  Drake was diagnosed with leukemia at age 3 on June 20, 2014. This diagnosis came only 17 days after he was diagnosed with autism. He had been sick for a month, if not a little longer. It was nothing too alarming; he just didn’t feel well. We took him to his pediatrician numerous times, as well as the ER. Nobody saw anything other than normal sick kid stuff. He had an ear infection or a cough, nothing major. The developmental doctor who diagnosed him earlier in June had requested that labs be taken to test for any vitamin deficiencies. The order was sent, and we were told we could do it at any time. June 20, Aaron and I were both off of work. We were tempted to go to Silver Dollar City that day but instead decided to go ahead and have the lab work done and then spend the day at grandma’s pool. Within an hour or so of leaving the Schmeiding Center and having blood drawn, I received a call from our pediatrician’s office. I was told that the blood work had come back already and that Drake needed to be seen at Arkansas Children’s Hospital due to some concern with a POSSIBLE cancerous infection. Being that it was a Friday afternoon and not knowing that he was sick, I naively asked if that meant early next week or what? She told me that no, he needs to go NOW and as long as he was stable, he could be transported by car, and that we needed to pack for several days. Stable? He was about to jump into the pool… Of course he was stable. I’m sure a lot more was said during that conversation, but I could not for the life of me tell you what it was. I blanked out and only heard bits and pieces of it. We got packed and met Aaron’s parents to drop our youngest off with them. We headed straight to the ER with grandma, grandpa, and brother following shortly after.

The ER was waiting on us. We waited in the waiting room MAYBE 3 minutes. More blood work was done, and we were eventually given the leukemia diagnosis late that night. We were moved to the pediatric intensive care unit for the first night. Drake’s blood counts were so low that they were surprised he was still able to function normally. The first several nights were very rough for everyone, but especially Drake. He had spiked temps of 104+ and was having allergic reactions to the medications. Type testing and plans were not made until Monday morning when we learned that given our situation, Drake had the best type of leukemia to have. He was diagnosed with Acute Lymphoblastic Leukemia, type B. While in the hospital, he had a surgery to place his Port-A-Cath, and it was discussed that after he was well enough, he would have surgery to place a G-Button (he refused to take ANY medication by mouth). We were finally released 7 days post-diagnosis.

Drake’s treatment plan is a total of 10 years. The first 6 months was very intensive, but now that he’s on maintenance, it is much better. He is seen once a month in Little Rock and has blood draws every week at Highlands in Rogers. August 2017 will be his last dose of chemo, and then he will been seen once a year until the 10 years.

What a powerful story. Can you tell me what friends and family did that was helpful for you during that time? 
Megan:  We had an absolute outpour of help from not only our friends and family, but from the community as well. Before Drake was even released from his initial hospital stay, there had been fundraisers set up, our house had been cleaned, and we had numerous offers to mow our yard. Mowing the yard was something that a ton of people offered to help with. We, at the time, did not need it done, but it was definitely something that you don’t think about having to do.  

Aaron and I were both off of work for several weeks after Drake came home, just to make sure that we were all accustomed to our new normal. A meal train was set up where friends and family signed up to bring us a meal everyday for a certain number of days. That was incredibly helpful.  

The biggest blessing for us though, was working for a department (we both work for the sheriff’s office) that was so understanding and willing to help. We did not have to worry about anything work-related. We are so appreciative of our work family and the sacrifices they have made in order to help us.  

Money, of course is going to be one of the largest burdens on someone going through a situation like ours. The hospital is amazing at helping, and every child is automatically matched with a social worker to help during hardships (gas money, paying bills, etc.). For the first 6 months of Drake’s treatment, he was seen once a week at Arkansas Children’s Hospital in Little Rock. Because his appointments were very early in the morning, we stayed in a hotel every Wednesday night and had clinic on Thursday. Without the help of others, we would not have made it. Even though Drake was not staying in the hospital, our friends and family realized that it was still very expensive making that trip every week.  

Was there anything people did that was NOT helpful?  
Megan:  In the very beginning… it was talking about it. We knew that people would have questions, but we didn’t even know the extent of what our new life was going to be like.

Another thing was visitors… Drake could not be around visitors for quite some time. His counts were too low to go into public or be around a lot of people. During the first several months home, he didn’t leave other than going to the hospital and the only people that came into our house were family members and therapists who had already received their flu shots.    

What tips you would give to other families dealing with pediatric cancer, on how to manage doctors appointments, side effects, other illnesses, school, friends, siblings, etc.?
Megan:  Just like every other stressful situation, you are your child’s advocate. If you don’t understand or like something, be their voice. The side effects of chemo SUCK. There is no way around that. There is nothing to prepare a parent for the sleepless nights, the constant vomiting, or the change in appearance. I personally did not want to see Drake’s hair fall out, so we chose to cut it as soon as he came home from the hospital. School is a whole new bag of worms now. There are restrictions and special forms and meetings that have to be had.  

How is Drake doing now?  
Megan:  He is doing AWESOME. He has doubled in weight since being diagnosed and truly looks like a normal, healthy boy. Looking at Drake, you would not know that he has leukemia. When we were going over his treatment plan during his initial hospitalization, they told us that they have NEVER seen a child NOT be admitted at some point during treatment. That was true for us. Drake was admitted in December 2015 for about 4 days. He developed cellulitis and his counts bottomed out. Once they got his counts back up, he was good to go. We have not (knock on wood) had any ER trips or hospitalizations since then. He started Kindergarten in August and is doing great.

A couple of months ago, Drake was having HORRIBLE issues with PICA. He was putting any and everything into his mouth. We talked to his OT. She hadn’t had much experience with it, but it didn’t stop her from helping. She talked to any and everyone that she could and suggested a handful of different things. I believe that she had even talked to you about it, Melissa! We did end up having his iron levels checked (big ordeal with what the chemo does to his levels and having to do additional tests), and we also had him seen by a behavioral doctor. With the help of his OT, other therapists, his pediatrician, and his oncology team, we have not had any issues with PICA in quite some time. It just goes to show that his therapists don’t stop caring once his treatment hour is up.  

It definitely hasn’t been JUST cancer with us or JUST the need for therapies. Therapy has helped Drake during our issues with cancer.