Pizza Night!!!

      Friday night "Pizza Night" started before the pandemic and has created a positive "comfort" amidst all that has changed over the last year.  It's funny because on our new YouTube channel (https://www.youtube.com/channel/UCaF1wRA8FXIF-3O1CE5RfyQ/videos) Christopher says, "We have been doing movie night since I was 3 or 4," and although we haven't been going quite that long, it shows how much of a tradition this has become for our family!  Below is our pizza recipe!  Feel free to print this off and enjoy!  If you want to make your pizza with Christopher and I, click the above link!  I also provide helpful tips to making the dough, flours to use, how to get non-fat mozzarella cheese melting, and fat considerations if making pizza is a new adventure for your family!  Use all your favorite pizza toppings on this dough! 

What I enjoy is that we can each adjust our pizzas to our own liking, and most importantly we can keep Christopher's pizza extra low-fat using Non-Fat Mozzarella Cheese.  When Christopher was younger his buddies loved making pizza at our house!  Hope this will provide your family as much fun as it has for ours!

Pizza Dough

 

Ingredients:

·      3/4 cup warm water

·      7grams sachet dried yeast

·      1/2 teaspoon salt

·      1/2 teaspoon sugar

·      1 1/4 cups white flour (1.5 LCT)

·      1 1/4 cups whole wheat flour (3.75 LCT)

 

Directions:

1.     Warm water to approximately 100°F- 110°F.

2.    Add yeast, salt, and sugar to water.  Stir and cover with plastic.  Set mixture in a warm place until foamy (approximately 5-10mins)

3.    Sift flour into a large mixing bowl.

4.    Stir in yeast mixture and mix to form a dough ball. (Depending on the moisture in the air you may need a little more warm water if the dough feels too dry or a smidge more flour if the dough feels too wet.)

5.    Knead on a lightly floured surface for 10 minutes, or until dough is smooth and elastic.

6.    Separate into four balls for personal size pizzas or two balls for large pizzas. Let sit 10 minutes lightly covered.

7.    Roll each ball out with a rolling pin to an 8inch diameter circle, adding flour to rolling pin and pizza dough when it begins to stick.  Flip dough often, as you are rolling.

8.    Place the rolled out pizza dough on a stone pan or a cookie sheet lined with parchment paper.

9.    Roll and pinch outer edges of dough to make crust.

10.  To make pizza just add pizza sauce and desired toppings and bake at 400°F for approximately 10-15 minutes on stone pan or 375°F on parchment paper on a regular cookie sheet for 15 minutes. 

 

Tips:

*You do not cook the pizza dough before you add toppings! 

*Look for fat free pizza sauce (or we use Trader Joe’s fat-free spaghetti sauce) and non-fat cheese for toppings. Hormel carries a very low-fat Ham we enjoy putting on top!

*Pampered chef stones are fun to use and create crunchier crusts without burning!

*I also really enjoy substituting the above flours with bread flour! It makes dough more substantial!

*For a nice variation, use the pizza dough recipe to create a Stromboli!   Roll out the dough as you normally would for pizza.  Then put fat-free ricotta, broccoli, ham and fat-free mozzarella cheese all on half of the dough.  Lift up the dough side that is still empty and cover the dough with all of the toppings.  Press down the edges of the dough with your fingers and with a fork to create a seal.  Poke holes at the top of the Stromboli to allow steam out when it is cooked.   Place in oven at 400°F for 10 minutes. Put spaghetti sauce in small bowl for dipping.

*If you use this recipe to make two large pizzas each crust has 2.6g LCT total.

Plastic and MCT Don't Mix!!

Christopher and his two amazing teachers who came to support him!

        I'll never forget the beginning of the pandemic.  I suppose we all won't, for different reasons, but ours was centered around the GA State Science Fair.  It was March, Christopher had worked super hard on his Science Fair Project in the fall and had won first place in the district fair. (He got "best overall" in elementary school for all of Metro Atlanta!) He was super excited to head to the state fair!  At the time, there were only six cases of COVID-19 documented in Atlanta, and his doctors felt confident that it would be safe to attend the science fair, as long as we washed our hands really good.  So we headed down to south GA, enjoyed our hotel room, and the next day he presented his project.  He had as much fun presenting his project as he did connecting with other students!  I couldn't have been prouder!  As we headed to our car after the fair was over, it was then that we learned Atlanta was shutting down!  I thought, "Oh my gosh, out of all the times I could have taken him to be around 200 kids and their families...I chose to do this amidst a public health crisis!"

       We survived that event, without implication!  Unfortunately, amidst on-line learning and obsessing with trying to understand how to approach COVID-19 and LCHADD.  I lost sight of the promise I made to Christopher that I would share about his science project and results on my blog for families to see!  Sorry Christopher!! If your child uses MCT oil, I strongly encourage you to read this entry in its entirety!  Not only am I proud of Christopher for the amount of time and hard work he put into this project, but his results are really important for FOD families to share with each other.  It has changed some of the approaches we have taken as a family when we use MCT oil!

Chris chose a variety of materials to test MCT oil's reaction!

       It was early October when I got a new shipment of Brand Now MCT Oil (this was the type of MCT oil we used for Christopher since he was born).  I was surprised when I noticed that the bottle was no longer in glass but plastic!  I vaguely remembered someone sharing with me along the way that plastic and MCT Oil don't mix.  I contacted the company concerned, but to no avail.  I contacted Nestle, who is in charge of medically grade MCT oil, and they confirmed that MCT does effect plastic which is why they put their MCT oil in glass bottles.  It was around this time that Christopher was trying to figure out what to do for his science fair project.  Ryan said, "It would be great if he could do something related to LCHADD."  Christopher then asked, "Mom, what exactly happens to the plastic when it comes in contact with MCT oil?"  I didn't know...but Christopher wanted to find out!

       Christopher spent the beginning part of his project just trying to better understand what MCT oil was, how it worked in his body, who used it, and how it was made.  Then when he was ready to test "the plastic" he quickly realized that not all plastics were the same.  Plastics have different numbers depending on what they are made of, and what they are used for.  He looked around our house to see what plastic numbers were on our storage containers, water bottles, and measuring utensils.  Then he decided he wanted to test plastic numbers 1,2, 4, 5, and 6, along with aluminum foil (because we use this when packing food for trips) and glass because he was certain that this would be the least reactive.

       Christopher poured MCT oil into various containers about the same size and measured the results over the course of two weeks.  Here were his results!  He created two different visuals to show his results.  Notice on the left side of the chart all of the possible changes that occurred in his experiment!

       I think we were both surprised at the changes we were able to see with our naked eye!  Honestly, when he started his project I was a little worried that he might not observe many changes because we didn't have a microscope...and I wondered if two weeks would be long enough to see change.  I kept my thoughts to myself though because this is science, and he needed to try and observe.  So you can imagine how surprised I was when he went to make observations of his materials the first week and found that MCT oil had completely leaked through the styrofoam and visibly eaten away at the material. Then he also noticed it had leaked through plastic #1 and #5!!  How many times have I put MCT oil or Lipistart in Styrofoam cups when he was in the hospital? Or used plastic straws in a smoothie with MCT oil?!

Notice the squiggles around the "Chick-fil-A" sign!  They were not visable before!

       I also encouraged him to get curious about why plastic #2 and #4 decreased in measurement, but there was no visible leakage on the paper.  It didn't evaporate...all the containers had lids! By the second week he noticed more changes when he emptied the MCT oil from the containers to take a closer look! Look at the squiggles that were formed on Plastic #1!!

                         Also the styrofoam's  plasticity changed!

       Needless to say Christopher's project spurred new questions along with answers!  I also started paying attention to when we were using plastic measuring tools for reciepes, plastic spoons to stir things on the go, and plastic plates!  We were at my mom's house over Christmas and he had put his eggs on a blue plastic plate and without thinking we put MCT oil on his eggs.  Christopher came in with his eggs gone but said, "Hey mom, the MCT oil took the blue off my plate!  I had blue eggs for breakfast!"  Horrified, I recounted green eggs and ham, and laughed because he had just finished his experiment but apparently neither of us had transferred what we had learned to this portion of our life!  Here were some of his take aways:

       What I loved about this project were all of the "moments" of growth I saw!  First, it warmed my heart when he presented his material to his metabolic doctors and dieticians, and they really thoughtfully were considering his data.  Then there were the moments where we made connections between what he was doing and what "real" scientists do every day.  He got a feel for the scientific process, contacting "professionals", and gathering data!  He also got to see how meaningful research can really impact communities and how they do things! (We won't be using plastic spoons or plates with MCT oil anytime soon...lol) But more than anything, I was so proud of him for learning about his metabolic condtion and taking the time to explain his need for MCT oil with his peers and judges.  My boy is growing up!

What Makes a Good Hospital Stay!!

     On the one hand, you know you have visited the hospital a little too often when you can write a blog comparing your different stays…hoping to learn from your previous experiences to make your next stay better.  On the other hand, I recognize that compared to some kids with Fatty Acid Oxidation Disorders, Christopher’s hospitalizations have been relatively few!  I am extremely grateful for the countless times Christopher has been able to fight illness without a hospitalization!  And yet, just three weeks ago we found ourselves unexpectedly at the hospital once more.  As we left, I had to ask myself, “What made this visit feel so much easier?”

   First, the clinicians listened!  Even if you have never experienced a hospital stay, I am sure you can imagine how challenging it is when you have doctors on your team that are not hearing you out.  I try to keep in mind, during our hospital stays, that doctors are human and that I have no clue what went on in their day…but let’s be honest, when Christopher is having muscle breakdown (rhabdomyolysis) my guard is up and I am ready to fight for whatever he needs to make him better.  A common tension amongst families of children or adults with a rare chronic condition is that families often know more about the condition than the doctor.  This is by no means an insult to all of the schooling doctors go through!!  How could I expect a doctor to stay up to date on the latest LCHADD information when there are only 6-8 kids in the entire state of Georgia with it!  I feel like the doctors and I do a dance when we first meet, when Christopher is admitted to the hospital.  They are trying to see what I know, and I am trying to see if they are willing to listen. 

     The fifth floor doctors at Eagleton Children’s Hospital this visit were amazing!  They treated me like I was a team member.  They ASKED Christopher and I questions, AND LISTENED!  They were even honest that they had never met a child with LCHADD.  All of this created wonderful patient/doctor report!  Plus there were the little things that showed they cared:  They requested a “My Special Body” book and wanted Christopher to sign it!  The nurse figured out how to get Christopher hard-boiled eggs by creating a “medical order” with the cafeteria.  The doctors not only followed my son’s protocol letter but also helped coordinate care by reaching out to his pediatrician!  All of these actions helped calm my anxiety about Christopher’s care, and allowed me to focus on just being my son’s mom during this stay.

    Second, the stay felt easier because I packed a lot of Christopher’s own food!  It may sound crazy, but after Christopher had dark urine (a sign of muscle breakdown) and I spoke with his doctors about bringing him in, the first thing I did was start packing food I knew he could eat.  One of the hardest challenges with past hospitalizations was that we were so limited with what Christopher could order from the cafeteria.  After Christopher has rhabdomyolysis, it is really important that he is eating well and getting high protein/complex-carbohydrate meals that are still low in fat.  With this in mind I packed: greek yogurt, low-fat ham, Ezekiel bread, tortillas (I had just made), beans and rice, and fresh fruit.  This fore-thought gave us so much more wiggle room with the timing of my phone calls down to the cafeteria and took away the stress of not knowing if I would have what Christopher needed nutritionally, when he needed it! Ultimately, we used the hospital meals to supplement what we couldn’t pack from home.  When I showed up in the ER with a large cooler I got a lot of curious looks, but it was worth it!

Playing x-box with his buddy Ireon!

     Christopher’s outlook was a bit different than mine, but in true kid fashion.  First, he loved that he “got to rest” because “my legs were so tired”.  He thought it was really cool that he got to enjoy “x-box” and visit the hospital’s library.  We watched movies together, a soccer game, read…and he even had a couple visitors! Wheeling him around the courtyard or playing piano in the chapel broke up the day tremendously.  

Hospital stays are not all the same.  They are a lot harder when he is having muscle breakdown due to a viral infection.  Not only is it scarier (cause you never know when those cks will peak and what other damage may occur), but he has to be confined to his room so as to protect other patients.  Anyone confined to one room for 3-5 days is bound to go stir crazy! 

   For those of you new to the LCHADD world I know you are wondering why these kids end up in the hospital so much, or perhaps you are wondering how Christopher landed in the hospital this go around.  For kids with fatty acid oxidation disorders (like LCHADD), when they get sick and are fighting viral infections their body cannot use their fat as energy.  So if they go through all of their sugar stores, their body will try to use the fat for energy but when it can’t it will start to break down the muscle instead.  This muscle breakdown leads to toxic by-products in their blood, such as myoglobin.  These toxic by-products are really hard on your kidneys and liver.  The treatment is to increase their calorie intake and start over-hydrating to try to flush the toxic by-products in their blood stream. This is done through oral hydration, IV, N-G tube, and/or G-tube depending on the situation.  Depending on how much muscle breakdown Christopher has experienced, and the cause, sometimes we can treat him from home.  Unfortunately, the only way to know exactly how much muscle breakdown he is experiencing is by getting a blood draw.

    Muscle break down can occur for these kids for a couple different reasons.  Sometimes it occurs if they get a viral illness with fever, and are unable to eat.  Other times they might play really hard at a sporting event/recess and not consume enough calories or maintain hydration as well as they thought.  Other moments there is what we consider the “perfect storm” of events.  Perhaps, it was a super amazing day!  Your child eat as he/she normally would have but unbeknownst to anyone they used more energy at the playground, and then they were hitting a growth spurt, and they were excited for the birthday party after school.  All of these things effect your metabolism and calories needs, but it is super hard to know when your child is hitting another growth spurt or how to compensate for excitement or stress.  All these things together can lead to muscle breakdown.  Then there are times when kids go into rhabdomyolysis and there is nothing as a parent you can pin-point.  Those are the hardest moments. 

Christopher back at school with his friends!

   This last episode for Christopher, we were never able to pinpoint one particular event that led to his muscle breakdown.  The resident doctor kept talking about Christopher’s “fantastic” day!  I loved the way he put this, because there was no blame or judgment in his tone for this episode.  He helped Christopher embrace the beauty of his day with the unexpected consequences.  Yes, Christopher had a busy day on October 6, 2018!  He got to spend all day with dad at school in his gym, played a short game of soccer with his friends in the afternoon, enjoyed a Nerf battle with his buddies during a sleepover and was looking forward to his best friend’s birthday party the next day!  He stayed “fueled” up very well through all of this!  Was this a lot?  Yes.  Has he had “fantastic” days before and not had muscle breakdown? Yes.  What sent him over the edge?  Growth spurt?  Stress?  Excitement?  The doctors told me I will drive myself crazy if I try to figure out why in this scenario.  And so, I have chosen this time to let the “why” go, throw the reasoning out the window, embrace his “fantastical day,” and feel grateful for a peaceful hospital stay.

"It's Cool to Have LCHADD..."

            This summer the Harry Crew took a road trip from Atlanta, GA to Minneapolis Minnesota and then on-ward to Lake Superior!  It was our first big road trip together that wasn’t to visit family and we stopped at several state parks along the way, and saw beautiful landscapes, boulders, and water.  After all of our adventures, what does Christopher talk about the most?  Where does he keep bugging me to go back?  “Mom, when can we go back to the Embassy Suites Hotel?”

            Yeah, sure, there was a pool, he got to watch soccer on a big screen, and he even got to eat something more than fruit at the continental breakfast (which is rarely the case).  But the zinger was that the FOD Family Support Group conference was there and for the first time, that he can remember, Christopher was able to connect with kids his age and older with FODs.

Learning how to make fat molecules and how they work in the body!

   This year at the conference, while the adults were learning about the latest research, and seeking to support each other through stories, their children were given the opportunity to do the same thing…in their own way.  We had two sessions for youth.

Learning about fat, protein and carbohydrates!

The first day we learned about our body: how it functions, how it metabolizes the food we eat, and how cells break down fat for energy in the mitochondria.  Our second day we did a science experiment discussing rhabdomyolysis (muscle breakdown) and then nine kids partnered up to role-play asking questions of doctors; confidently!

What touched my heart more than anything was watching Christopher connect for the first time with Luke, an older youth with LCHADD.  I’m not sure that they had super deep conversations about living with LCHADD (although perhaps I shouldn’t put anything past my 10 year old son), but Christopher enjoyed getting to spend time with him so much!  A space was created…a kind of space he hasn’t had before…where LCHADD existed outside of himself and his experience…and perhaps for a moment having LCHADD, counting fat, taking MCT oil, monitoring exercise; was a norm.  Christopher came back after playing cards with Luke Saturday afternoon and said, “It’s cool to have LCHADD!”  The door was open for him not to feel alone in this journey, and I still tear up thinking about it.

Luke took time to hang with Christopher during one of the adult sessions!

The conference plays an important role for every family who has a child with an FOD.  It creates space for clinicians to disperse new information, while inviting families to ask questions and seek understanding.  There is a tremendous feeling of support as you share your stories and listen to others.  These stories are also helpful for the clinicians to hear because when you deal with rare inherited conditions sometimes overlap of symptoms are noticed for the first time in environments like these. 

Thank you to Deb Gould and all of the volunteers that help organize this conference! And thank you to the clinicians and families that take the time to come!  Conferences like these are extremely expensive to put on!  Ryan and I are running a Half Marathon on November 10^th at Chickamauga Battlefield in North GA to raise awareness about FODs and money for our next conference.  Please consider donating!!!  There are two ways to give.  You can either donate on-line: https://fodsupport.networkforgood.com/projects/44599-fod-fundraising-2018 (select amount, then “Chickamauga Battlefield”) or you can donate via check: Payable to: “FOD” and put in memo “Race donation/General Trust.  All checks should be mailed to: Deb Gould, PO Box 54, Okemos, MI 48805-0054 .  All donations are tax deductible!

Will He Get Tired of Cooking?

      “Will he get tired of cooking…tired of eating…as he gets older?  How will this affect him?  Will this lead to him being off diet?”   This thought, or worry, goes through my head on occasion.  Typically it is after a long day when I myself am exhausted and the last thing I want to do is cook.  On those days I think about Christopher.  What will it be like for him when he is 20 and comes back from a long day of classes and doesn’t feel like getting something to eat?  How will we teach him to push through in those moments and do the right thing?  How do you prevent burnout from cooking?

            I have brought Christopher into the kitchen with me from a very young age, trying to encourage a love of food and “the process” that is cooking.  He used to love being in the kitchen flipping pancakes with me, but on an average night, after a long day of school he is much more interested in playing; which I totally understand!  Yet, I still try and create these moments, where I can teach him skills.  And for the now, this is enough.

            I am fully aware though, of how much time food prep takes for my little guy.  I easily spend three hours a day cooking and preparing food…And that doesn’t include dishes (thanks Ryan!).  So how will he carve out that time into his own schedule as he gets older?  How do I support him as a young adult?

Trying to make food fun for football game!

I am hoping to glean tips along the way from older parents, and the FOD Conferences.  One mom shared that she makes a couple of meals that her son can freeze and take with him to college.  Another mom and her daughter worked hard with the college cafeteria to make sure there was always food available for her.  I tuck these ideas in the back of my brain.  But what else?

It's Waffle Time!

  There are these moments, as your kids get older, that feel so surreal.  I appreciate these moments because I am able to stop, quiet my mind, truly enjoy the moment, and bask in what that moment “is”.  I find myself overcome with gratitude  when I watch Christopher take initiative with practicing his piano, when he still begs for a story time, or when he asks to do something new…and it clicks, “Wow, he is old enough to try this!”

  A couple of weeks ago, Christopher asked to make waffles by himself.  This may not seem like a big deal, but all store bought waffles have too much fat for him.  So when we make waffles, we do it from scratch.  I hesitated, then realize that we were really here.  We were really at a place where he could explore doing this and I could sit and read a book close-by in case he had questions, or I noticed something unsafe (like the waffle iron popping out of our old 1970’s waffle maker).

  He did such an amazing job!  And I will never forget this moment.  Here is the recipe that we use to make waffles.  They aren’t quite as crunchy as I’d like them, so sometimes I will put them in the toaster after we take them out of the waffle iron.  I was told that homemade waffles just aren’t crunchy the first go around…but I suppose it could be my iron too.

 

Buttermilk Waffles

Ingredients:

·      1 cup unbleached all purpose flour

·      1 cup whole-wheat flour

·      1 tbls brown sugar

·      1/2 tsp salt

·      1tsp baking soda

·      1/2 tsp ground cinnamon

·      1/4 tsp salt

·      2 cups non-buttermilk

·      2 eggs, separated (One egg yolk you will keep, another you will discard.)

·      2 tsp MCT oil

·      2 tbls Banana

·      2 tbls non-fat greek or plain yogurt

·      1/4 tsp vanilla extract

·      1/4 tsp almond extract

·      Non-stick spray for grill

Directions:

1.     Turn waffle iron on to pre-heat.

2.    Make non-fat buttermilk by juicing 1 lemon into a 2 cup Pyrex measuring cup.  Add enough non-fat milk to make 2 cups.  Set aside for 5minutes and your milk will turn into non-fat buttermilk.

3.    In a large mixing bowl mix flour, brown sugar, baking soda, cinnamon, and salt.

4.    In preparation for the eggs get a small bowl and medium size bowl and place on counter.  Crack first egg and put egg white in medium bowl and egg yolk in small bowl.  Crack second egg and put egg white in medium bowl and throw the remaining yolk in the trashcan.

5.    In small bowl with the egg yolk mix MCT oil, banana, yogurt, and extract until fully combined.  Set aside.

6.    With electric mixer beat egg whites until stiff peeks form. Set aside.

7.    Mix non-fat buttermilk into dry ingredients with a wooden spoon, quickly, until almost blended

8.    Add small bowl of wet ingredients, until combined.

9.    Gently fold in egg whites.

10.  Spray top and bottom of waffle iron with non-stick spray.  Then spoon out batter in the middle of the iron until it ALMOST covers the edges. (If you go all of the way to the edges the batter will spill over the waffle iron and it will be a mess!)

11.   Close waffle iron and wait approximately 2-3 minutes for waffle to cook before you remove

*7 grams of fat for the entire recipe.  Makes approximately 17 waffles.  Each waffle contains about 0.3 grams of fat.

"...Not Because (it is) Easy..."

       Over the last two years I’ve been deeply encouraged by figures of history who have done tremendous things, despite illness.  When I was a child we learned about heroic figures such as Abraham Lincoln or John F. Kennedy, but somehow their ailments and struggles were omitted from what we learned.  Perhaps historians felt these facts would somehow make them weaker figures.  Yet, I have found that knowing these figures’ struggles and hardships have left me with an even greater awe and admiration for these people I have never met.  In fact their personal struggles, I believe, make these figures’ stories more beautiful.

       It all started last year when Christopher got a cold and was out of school for a couple of days.  His class was learning about Theodore Roosevelt.  I got several books from the local library and was fascinated to learn that he

Christopher as JFK next to his project for school.

was sickly as a child, and often struggled to breath.  As we read about Theodore and then Franklin (who had polio) I was very intentional about trying to connect how these leaders were able to accomplish great things in the midst of pain, hardship, and illness.  I definitely got the “Yeah, yeah…” response, any seven year old little boy might give.  Yet, it challenged me, as I started to recall other biographies I had read, where people overcame not just personal hardship but physical ailments to accomplish important things.  Abraham Lincoln struggled with depression, Helen Keller was blind and deaf, and John F. Kennedy had such severe back pain that he had meetings with close advisors while soaking in his bathtub! 

We were so proud of the hard work he put into this project!

A little over a week ago Christopher participated in history day at his school.  He spent about three weeks researching John F. Kennedy in preparation for the speech and project he created.  It’s embarrassing to admit, but all I knew about JFK before this project was that he was Catholic and was assassinated.  It was eye opening to learn more about his journey, especially his illnesses and personal tragedies.  Christopher and I discovered together that this historical figure was very sick as a child, dealt with severe chronic back pain, was diagnosed with Addison’s disease, and had two siblings die as young adults.  Kennedy refused to let these challenges prevent him from accomplishing his goals, and Christopher seemed to connect this more to his own life this time.  Again I was inspired and hopeful.

One of the many notes he took for his project.

            John F. Kennedy said, “We choose to go to the moon… and do the other things, not because they are easy, but because they are hard.”  When Christopher was in my belly, I often prayed that he would be a “fighter.”  That this child I had would know the importance of not giving up, no matter what.  LCHADD can make certain tasks feel harder at times, but this doesn’t have to be the end of Christopher’s story.  The longer I live, the more I believe that the power to change things for the good is born out of struggle.   My hope is that Christopher will use his struggles to create beautiful and powerful changes in this world.

*In loving memory of Grandma O, who adored JFK and my sister, Veronica, who taught me about courage and pain.