Non- Fat Pumpkin Muffins

        We are getting close to that time of year again when pumpkins take over our world and our dishes!  Pumpkin is a beautiful thing!  I think many of us have some fond memory of pumpkin, perhaps related to Thanksgiving, but when you are trying to cook foods very low in fat pumpkin becomes a beautiful staple that adds moisture and flavor!
        A  couple quick tips that I have learned cooking low fat.  First, it is best, whenever you can, to use fresh herbs and spices.  This gives your dish a burst of flavor that you won't get from certain dried and pre-ground stuff.  In this particular recipe if you have a couple extra minutes and a mortar and pestle, grind your own dried cloves!  You will be amazed at the difference and burst of flavor.  Second, don't be afraid to reduce and layer sugar! By layering sugar I mean try to use sugar in the raw, brown sugar, white sugar and a dash of honey- or some combination.  Yes, it takes a couple extra minutes, BUT I think when you are working with less fat layering sugar adds complexity back to the taste of your dish! 

       Last comment:  I have the muffins listed as non-fat, but as you know from earlier posts fat is in everything and nothing can be completely fat free.  So based on labels and the website: nutritiondata.self.com I estimate that there is a total of 3.5 grams of fat in the entire recipe or less than .3 grams of fat a muffin.  (Can you believe that a cup of pumpkin has 1 gram of fat?  Who knew?)  Below is one of the first recipes I created for Christopher to enjoy...but I will be honest...I end up eating half the muffins myself!  Enjoy!
 

Non-Fat Pumpkin Muffins 

Ingredients:

·      2 c. flour (1 cup white; 1 cup whole wheat pastry flour)

·      1/2 c. sugar (1/4 cup sugar in the raw; 1/4 cup brown and white mixed)

·      3 tsp. baking powder

·      1 tsp. baking soda

·      1 tsp. salt

·      1 tsp. cinnamon

·      1/2 tsp. ground cloves

·      1 c. canned pumpkin

·      1/2 c. skim milk

·      2 egg whites

·      1/2 c. mashed bananas

·      1/2 c. raisins

Directions:

1.     Preheat oven to 350°F

2.    Sift dry ingredients into large bowl.

3.     In a medium bowl stir pumpkin, milk, egg whites and mashed bananas until well blended.

4.    Add wet ingredients all at once.  Stir slowly, until dry ingredients are dampened. Do not over stir.

5.    Stir raisins in with only a few strokes.

6.    Prepare muffin tin with cooking spray.  If using muffins cups, spray these with non-stick spray as well, as these muffins can stick to the cups.

7.    Fill cups 2/3 full. Bake 20-25 minutes. Makes 12-14

Christopher Starts Kindergarten!

           

        Every day brings new challenges, and new beauties!  Many years ago a dear friend said, “You just have to be prepared for your experience to be different,” in regards to raising a child with LCHADD.  In this statement I have found wisdom.  Our stories are all different, this is true for the family with LCHADD and the family without, but perhaps I am forced to accept this understanding more often and in a unique way.  People asked me throughout the summer what my fall would look like with Christopher starting school, and I found myself often stumbling over words or just staring at them thoughtfully.  I didn’t know what to expect and I wanted to be open to each new day, embrace it for what it was and love it regardless.  I knew that Christopher’s kindergarten experience was going to look a little different than his friends, but what that entailed I could only speculate.

Christopher's first day of school!

            First, Christopher LOVES kindergarten!  In general he gets excited about anything new he is about to pursue, so it didn’t surprise us that he grinned ear to ear that first day of school.  He has loved learning about shapes, the classrooms rules, music, PE…and of course recess.  When I asked him the other day what his favorite thing about school was he said, “My friends!  I love playing with Ireon and Beck!”  I am so glad he is there and able to have consistent friendships, and learning how to communicate to others without me.

            Our journey into school has been filled with twists and turns that are quite different from the average student.  Many families enroll their child into school, buy school supplies, cry the first day and then drop them off at school.  Our experience started a week and a half before school when we learned that his number was called off the waiting list for West Side Charter School.  We were elated and a little nervous about how we would proceed with his 504 Plan so close to school starting.  The principal was amazing.  After we accepted the open spot at West Side Charter and shared about Christopher’s condition, he e-mailed us immediately.  The principal and the Dean of Curriculum organized a meeting for us to come and share with the staff about Christopher’s LCHADD.  We then met with the nurse, filled out paper work and had meetings with his two wonderful teachers, Ms. Rosella and Ms. Monica.  We worked together creating and implementing his 504 Plan.  I stayed in the classroom most of the first week, so we could all get a better handle on how to navigate his extra snacks throughout the day and monitor his activity.  Through this experience I have not only gained a better understanding of what his day looks like, but I've also been able to meet his dear classmates, who have captured my heart!

       

Christopher and Ms. Rosella, lead teacher!

     After two days of school Christopher got a cold, so we (the teachers, nurse and I) worked closely to navigate his extra fluid intake. (When Christopher gets even a common cold we have to increase his fluid to 60-80oz a day to flush his kidneys, in case of muscle breakdown.)  We are still navigating how to handle half-days.  Our general rule of thumb is that when he is recovering from a cold, or his energy seems low we have him attend until 12:30 or 1pm.  Yet, even with this general rule deciding how often to use half-days is tricky.  Our reality is that he has already been sick three times this year and we are in the first month of school.  Also it’s hard to navigate what is the typical “kid tiredness” that comes with the transition to full-day school and what is LCHADD.  I am so grateful to have his wonderful teachers and administrators to discuss this with.  It is comforting to not have to make these calls on my own.

            Perhaps what hit me the hardest today is that all of the sudden we have a team of educators and extra people in our lives that really care about Christopher.  This is a wonderful thing!  Last year I made the hard decision to home school Christopher because he seemed to spend more days at home sick then participating in Pre-K.  We enjoyed each other and had a lot of fun, but there was a certain level of loneliness to our experience, even amidst all the events we participated in!  Toward the end of the year Christopher said, “I love you mommy, I just need to be around other people.”  I already knew we would try public school again the following year because I

Christopher and Ms. Monica, para-pro!

felt like I was drowning trying to lesson plan, be teacher, nurse, create play-dates, stay on top of medical appointments, fight with the insurance company…and then just be mommy. Christopher’s statement solidified it all and we have appreciated our new community this year.

            Christopher’s school year will be filled with adventure!  Christopher will attend school.  I will participate and help out in the classroom on occasion.   He will come home early at times when his is tired, have school at home with special projects when he is sick, and have Skype calls with his class if he is out for awhile due to illness.  He will carry a massive cooler every day with all of his snacks and milk, and communicate with the teachers about how his body feels.  He will make friends, laugh and cry with them, learn to read, learn to engage in meaningful conversation and learn how to wait his turn.  Our journey may have a few different mountains and turns, but it truly is delightful!

Love, Obsession, or Passion?

     It all started last year around this time.  Christopher picked up a helmet, headed toward the tee, choked up on his bat and swung.  The seriousness that runs across Christopher’s face when he plays baseball started then and has carried over until this year.  He often doesn’t crack a smile until he has run across home plate.  Don’t let his tone fool you though, he is having fun the entire time…he is just focused…very focused!

            Last year’s t-ball experience sparked something in Christopher that I would have never imagined, a deep passion (and at times I think obsession) with baseball.  During his first t-ball year he wore his baseball uniform sometimes 4 days a week just because he liked to imagine himself on the field.  He wanted and still wants to practice every day.  If we can’t go outside, no problem!  Christopher grabs a tennis ball and becomes the announcer, batter, and fielder all at once…in our hallway!  It is the most hilarious thing to watch!   He calls “Freddie Freeman” up to bat, throws the ball (pretends it is a line drive) slides to catch it and then determines whether Freeman is out or safe.

            Christopher’s passion and intense practicing led him to play on two teams this year!  He started off playing t-ball with the 4-6 year olds, but it was clear to the 7-8 year old coach that he was ready to play with the bigger kids and be a bit challenged.  So the coach offered to let Christopher practice with the older kids, and then half way through the season invited Christopher to start playing games.  My husband and I were a little worried about 3 practices a week and two games on Saturday; is it too much?  But Christopher really wanted this…and we didn’t want to kill his passion for the game!

            Did I mention that Christopher has LCHADD?  Honestly, Christopher playing baseball, and this intensely, has been a surprise to us both!  When Christopher was first diagnosed with LCHADD we wondered about sports, and whether this would even be possible.  My husband and I are both athletic, but we had heard enough stories of kids with LCHADD struggling to keep up with sports that we really were not sure.  Then when we signed Christopher up for T-ball we thought, “This might be perfect.  He will get breaks during the dug out to fuel up and in the outfield he won’t be running all the time like he would in other sports.”  So far so good.  The first year of t-ball we had Christopher’s CKs checked after two practices and a game and everything was normal.  This year we have kept him fueled up and he has done really well!

            What does baseball look like for this kiddo?  A lot of “fueling up”!  Typically 30 mins before a practice or game Christopher eats a meal with a tsp of MCT oil over his food.  Then right before practice he drinks about 4-6oz of Lipistart mixed with 1 Tbs. cornstarch.  During the actual event he drinks a combination of Gatorade and coconut water every 15mins to assure hydration.  (Dehydration can send a child with LCHADD into rhabdomyolysis just as quickly as lack of food.) When he plays with the older boys I try to throw in an extra snack with MCT oil during game days.  Shortly after a game or practice we are now trying to add in more protein with Greek Yogurt to help the muscles re-build.  Outside of keeping him “fueled-up” there is a lot of cheering, encouraging and explaining the game!   He loves it!  Some of the kids ask a little about his extra snacks but he seems to take it in stride.

          Do I worry?  YES!  If he had a fuel light on his body like our car, that would be helpful!  It is hard to know if we are giving him enough, keeping him hydrated enough…and if we are monitoring him close enough without suffocating him.  Christopher is learning more and more to listen to what his body needs, which is great!  But he is still just a normal little boy who is focused on the game more than anything!  And this is how I want it to be…so all the worry and fear that I carry I try not to show to him.  I wish that I could just sit and watch the game and not be distracted by my worry, but I feel so grateful that he has this opportunity to play!  I am very aware that not all LCHADDers get this chance.  I don’t know why and it makes me very sad…but we are so happy and proud of our little guy!  He has got an amazing swing!

Pancake Day!!!!

Are you getting hungry yet?

 Twice a month Christopher and I do what we call, “Pancake Day.”  I can hear his screams of excitement even now as I write this post!  Since before Christopher turned two he has loved pancakes; by age four I could genuinely call it an obsession.  Pancakes were an easy thing to add to his diet when he was small because we could make them virtually fat free using tapioca and white flour.  This was a necessity when he could only consume 3 grams of fat a day!  Now that he can have between 8-9grams of fat a day, we are able to use more complex grains (i.e. whole wheat flour, brown rice flour, fava bean flour, coconut flour).

 Pancake day started as a way for me to encourage Christopher’s excitement around cooking and a way to save time.   Basically we use a large flat electric griddle, make a big batch of pancakes, and then consume half of the batch of pancakes the first week and freeze the rest for the following week.  Like any routine this has metamorphosed, and I hope that we are able to continue this tradition for another couple years.  Not only do we make large amounts of pancakes now, I have been able to throw in math, writing…and even a little geography.

            Math:  When Christopher was really small I had him simply count the pancakes with me.  Then we started doing simple addition by adding the pancakes on the plate with the pancakes on the griddle.  Recently, after he learned how to read “total fat” on labels he started to tally fat grams from the blueberries and various grains that we use to cook with.  Pancakes are also a great way to introduce measuring and sifting because, lets be honest, pancakes are one of the most forgiving recipes.  Nothing has to be perfect and they still turn out yummy!!!!

            Geography:  Christopher went through a phase where he was really into maps and states.  One day he asked me to make “states” pancakes.  He would chose a state from his United States Map and either say it or ask me what it was.  Then I would do my best to make a blob that mimicked the state…and he would use his vivid imagination and say, “Great job mommy that looks just like Florida!”

            We always finish our pancake adventure with a movie or a Scooby doo episode!  Perhaps these days he is enjoying the grand finale of television the most, but I still enjoy the process and enjoy all the things he gets to learn along the way.

            I am including two pancake recipes that we use off and on.  One made with wheat flour and one that is gluten free (He has a good friend who can’t have gluten so this has been great for the both of them!)  Honestly we love getting creative with the flours and often do some kind of combination…and include coconut flour too for fun (DON’T USE COCONUT FLOUR IF YOUR CHILD HAS MCAD!).   We have tried fava bean flour and garbanzo bean flour to increase the protein, but beware that these have a little more fat and taste a little more harsh. 

            Enjoy the pancake recipes below!  And don’t forget to make something silly with your pancakes!  That’s for your sake as much as your kiddo!  We gotta keep smiling!

Extra- Protein Yum-Yum Pancakes

Ingredients:

·      1/2 cup 1% fat whipped cottage cheese (adds 1grm fat)

·      1 large banana

·      1/2 cup blueberries or diced strawberries

·      1/4 cup non-fat milk

·      2 egg whites

·      1/2 cup whole wheat flour

·      1/4 cup whole wheat pastry flour

·      1/2 cup white flour

·      1 tbl baking powder

·      1/2 cup- 3/4 cup non-fat milk depending on desired consistency

Directions:

1.     In small food processor or blender blend cottage cheese, banana, 1/4 cup non-fat milk and two egg whites.  (If a processor or blender is unavailable, mash the banana and then whisk these ingredients together.)

2.    Sift flour and baking powder in a large bowl or Pyrex cup.

3.    Add liquid from the food processor and stir.

4.    Gradually add the second amount of milk (1/2-3/4 cup) until batter is desired consistency for pancakes.

5.    Add blueberries or strawberries if desired and stir gently

6.    Pour pancakes onto non-stick pan with or without non-stick spray.

7.    Flip and Viola!

Tips:

* My brother got me an electric griddle for Christmas one year!  It is more than worth the investment!  I never have to spray the griddle when making pancakes, flipping is so easy and the amount of time I save by cooking 6-8 pancakes at once is nice!  Especially since my little guy LOVES pancakes!

*You can substitute cottage cheese for non-fat greek yogurt and this will decrease fat of overall recipe.

makes 11 Large pancakes; Batch has approx 51grms protein and approx 3grms fat.  1 pancake has approx= 4.6 grms protein and .27grm fat

Gluten-Free Low-fat Pancakes

Ingredients

·      1/2 cup tapioca flour

·      1 cup rice flour

·      2 tsp baking powder

·      1 tsp baking soda

·      1/2 cup mashed banana (approx. 1 banana)

·      1/2 cup blueberries

·      1 cup non-fat milk

·      2 egg whites

Directions:

1.     In small food processor or blender blend banana.  Add 1/2 cup non-fat milk and two egg whites and blend until slightly frothy.  (If a processor or blender is unavailable, mash the banana and then whisk these ingredients together.)

2.    Sift tapioca flour, rice flour, baking powder and baking soda in a medium bowl or large Pyrex cup.

3.    Add liquid from the food processor and stir. (Do not over-stir!)

4.    Gradually add the rest of the milk until batter is desired consistency for pancakes. (You may not use all of the milk depending on your climate’s humidity so go slowly!)

5.    Add blueberries and stir gently with spoon

6.    Pour pancakes onto non-stick pan.

7.    Flip and Viola!

*The total recipe has approximately 4 grams of fat primarily coming from the brown rice flour.

Snow Day!

            Some of the fondest memories I have as a child are in the snow.  There is just something magical when everything around you turns white and the sun comes out and the brilliance of snow crystals are all around you…But lets be serious, as a kid the beauty of snow probably comes into third place after sledding/skiing and being off school!  Kids have to have their priorities right!  I know that snow activities can be dangerous, but as a kid and perhaps even as an adult many of the typical worries drift far from my mind.

Christopher's first snowman!  Age 4

            Last winter was Christopher’s first experience with sledding, and perhaps when I gave up attending to my blog.  Like any four year old he loved it!  It was close to New Year’s, we were in Pennsylvania visiting family, and the snow just poured from the sky.  His grandparents took him out in the morning for his first sledding expedition and Ryan and I were able to catch the end of it!  If you yourself are reminiscing about your own snow experiences, perhaps you remember how tired you were when you got back home. During activity, Ryan and I can’t help but obsess a little about Christopher’s calorie intake and this adventure was no different.  He “fueled” up before and after snow activity, took a nap and after nap time wanted to go out again.  We fueled him up again before making a snowman and sledding one more time.  Two excursions that day, one hour each, led to 5 days in the hospital with CKs reaching 70,000.

           For the next four months I searched for an answer to, “why?”  I knew that the basic explanation was that he used more calories than he consumed and therefore his body attempted to use fat for energy, leading to muscle breakdown. Yet in general, Christopher is an active child who will hike a 3 mile trail in the summer, loves to play baseball, and runs around every time we visit the playground.  We are always working to keep his calorie intake up, what made this event so different?

        I began searching medical journal articles trying to understand the effect that cold has on the metabolism and came across new research on “brown fat”.  I spent the next 5 months reading, talking, questioning and wondering if brown fat and its use of long chain fatty acids might play a role in all of this.  I spoke with some amazing people, researchers and clinicians in the process.  There are not definitive answers, but there are some things we know that are certain: Brown fat is activated when body temperature drops in order to help keep the body warm; More people than just infants access brown fat; When brown fat is activated it uses large amounts of glucose at one time.  All of these things, in addition to our experience, makes me feel that there is a strong probability that the cold is harder on our little guy’s body than the average kiddo.

Christopher had a marvelous sledding time today!

            Fast forward to today.  What do you do with a five year old little boy who is excited to go out in the snow and be a kid, when you don’t know for sure if you will repeat last year's experience?  (The truth is that although cold probably played a huge part in is hospitalization, there is no way to know if it was the only factor.)  Do you keep him inside and play it safe?  Do you take him outside with precautions?  We decided the later.  Plenty of “fuel”, extra MCT oil, more Lipistart, Gatorade, lollypops (for instant glucose), protein to rebuild muscles just in case…and monitor very closely.  I want Christopher to try and have these experiences.  It is a lot at times.  He gets frustrated with “breaks”, I look like a crazy parent forcing my kid to drink Gatorade every 15mins…and I worry.  I don’t want him back in the hospital and I know if we are not careful there is a possibility of this…a big possibility.   I struggle with the art of monitoring/worry and holding joy of the moment.  I am striving to worry less, monitor more…and just smile as he rides down the hill and gives me two thumbs up.  Laugh as he socks me in the face with more snow…and embracing him extra closely as we both have the excitement of experiencing the snow together.  I won’t lie, I wish at times I could just experience the moment without having all that other crap on my mind, but I am grateful for the moment.  And today he enjoyed the snow and is doing just fine.

Adventures in Traveling

Traveling with a 3 ½ year old…ahh…the mystery, the wonder the…discovery!  The first plane ride that Christopher remembers was to visit his uncle in Colorado several months ago.  He bounced around the airport in amazement, and as the plane took off from the busy hub-bub of Atlanta he let us know, “It’s going to do it! It’s going to do it!”  Then when we got off the ground there was a huge handclap and shout for joy, “Hooray!” (I suppose I could have been a little embarrassed by the commotion, but who am I to squelcher a child’s joy?)  Our recent trip to Seattle, to visit friends and attend the National FOD conference in Portland, proved just as exciting.  To most of us connection

 

flights might seem like a drag (just something to elongate the process of getting to our final destination) but to Christopher these connection flights meant another adventure and more opportunity to see these massive creatures (the airplanes) take off.  He decided quickly after the flight to Chicago (which led to our connection in Seattle) that he wanted to be a pilot.  And so he carried his small airplane around and practiced “landing” his aircraft throughout the day! (with as much vigor and determination as an actual pilot, I would add)  So you can only imagine the amazement and excitement when a wonderful pilot let Christopher sit in the cockpit after our second flight!

The journey of traveling with a child who has LCHADD has a lot of similarities to anyone who decides to travel with children. There are the similarities like the story above, but also there are the missed naps, tantrums, songs sung to pass the time, beauty of new places, the joy of raw education, and the smell of hotel rooms.  Amidst all the similarities, differences exist as well…and these differences can lead to adventures in and of themselves!

Lets start with exhibit A (the picture to the right of the screen).  Now if you are an FOD/LCHAD parent reading this, the sight of the suitcase on the side of the screen probably brings a chuckle or a knowing smile…but if you are with the security at the airport the look on your face might be quite different.  The largest responsibility I have found in packing for our trips with Christopher is making sure that we have all of his medical formula, medical supplies (glucose monitor ect.) and his precious MCT oil.  I have to make sure that we not only have enough for the trip but enough in case we get caught somewhere because of bad whether, car breaks down or he has a crisis and has to stay in the hospital.  Then there are those every day experiences you have to prepare for…like spilt milk (i.e. medical formula)…literally!  So every trip we go on I count the cans and do the math at least 3 or 4 times to make sure that we have enough.  Then there is the MCT oil, this precious oil that gives him vital energy throughout the day.  Have I wrapped it enough with towels, so it won’t break?  Is it easily accessible?  If we are visiting larger cities there is the comfort that we might be able to find it in a natural health food store, but in the small towns finding this important medicine would be more than challenging.  Carrying this load of formula with us in our car is one adventure, but carrying it on the plane is another.  We have been really lucky going through TSA so far.  We carry a special letter from Emory so we can carry all of Christopher’s medical supplies, including his oil and formula, in a carry-on bag (you can’t risk putting it on checked baggage).  They scan and test everything for explosives, then let us through.  I am so glad that Southwest Airlines does not charge for your first two bags…because it would be nearly impossible not to check bags when you have to carry this much medical formula with you!

Now lets talk food.  By plane we carry a mini-cooler with a large assortment of snacks and meals, and by car we pack a very large cooler.  I must admit meal planning was something that I had to get used to when going on trips.  Before Christopher was born when Ryan and I would go on vacation, meals were a lot more relaxed.  Sure we would take snacks with us on road trips andcook at our destination, but during vacation time we eat out a lot more and were concerned less about meal planning.  Now it is so different because we know that eating well is so much a part of keeping Christopher healthy, we can’t take the “break” that we used to on vacation in regards to eating strategically (and I suppose we eat better because of it).  Before a big trip we always talk with friends or family to make sure that we will have certain staples when we get there (i.e. yogurt, potatoes, salad, peas).  Then we have to sit down and discuss the meals for the week: What meals will be “Christopher-Friendly”?  What meals will not be?  I try to make muffins ahead of time to always have on tap and fresh fruit and veggies are an easy go-to.  It is wonderful when friends and family offer to make a “Christopher-Friendly” meal when we travel because it frees my brain up for one or to nights! 

I find the most challenging thing about traveling via car is making sure that we have enough food for Christopher for several days.  Occasionally we are lucky enough to find a place to stop and get sushi or I can peel part of a chicken breast away at Chick-fila and add our own sides, but we have to plan as if these options do not exist, just in case.  Christopher at this stage is really accepting of what he can and can’t eat while we are traveling.  He is way more concerned with having a chance to play and having a cup with a straw in it when we stop to eat, than whether he can actually eat something off the menu.

The last two things that linger on my mind that wise older FOD parents have warned me about:  “Always make sure that where ever you travel to has a kitchen.” and “Remember that excitement uses more energy/calories.”  We have been really lucky because so far all of our trips have provided easy access to a kitchen…but I know that as we plan out future family trips this is something that will remain on the fore-front of my mind.  The whole excitement piece…I feel so grateful for the warning!  So far Christopher has done really well on trips, not exhausting himself from excitement, but I feel like I have to give credit to the families that have gone before us and shared that excitement can lead to extra calorie use and thus lead to metabolic crisis.  This warning has made us super vigilant on trips to feed him often even though it seems as though he is sitting more and possibly not using quite as much energy.

On a completely different note, I did want to let everyone know that we met our fundraising goal of $10,000 and that the clinic was very excited and grateful!  I apologize for my delayed response in letting you know (as many of you know I have been having some of my own health challenges the last couple of months).  If you meant to give but didn’t get a chance you can still give using the link to the side of our blog or by mailing in a check to the address below.  Please e-mail me if you gave and didn’t receive a tax credit letter, or the letter was mis-printed in any way!

Race Day!

Sunday morning anticipation was in the air as we woke up at 4:30am.  Ryan and I had set out all of our clothes and equipment the night before, so all we had to do was gather last minute items in the wee hours of the morning.  By 5:15am we were out the door, leaving Christopher with Ryan's parents, who would meet us at the beginning of our triathlon closer to our start time.

We arrived at Chastain Park around 6am to set up our "transition material" in the bike area.  It was amazing to watch all of the race participants setting up there things and learn their methodology and approach, so as to have a quick transition.  When the race started I was awed at all of the people in the pool doing laps.  In all my years of life guarding I had never seen such a spectacle!  For the most part it was pretty civil, but there were definitely feet kicking various people out there!  Ryan and I started about 20 people from each other, but Ryan quickly caught up to me on the bike and we did the bike and run together!  Overall, we did very well.  We finished our 400 yrd swim, 15 mile bike and 3mile run in exactly two hours!  The most challenging segment for both of us was the bike, as the hills were monstrous!  We knew that the hills would be challenging and so we trained a lot on hills, but the steepness and length of each one was crazy!  Ryan laughed at me trucking up one hill because I grunted so loud (I couldn't let it conquer me!) he could hear me twenty feet behind him.

It was so encouraging to have close friends along our transition sites cheering us on and Christopher yelling, "Go mommy and daddy!"  The best feeling came after the run.  My legs were completely numb at this point (numbness is better than pain I guess!)...and as we crossed the finish line...it just all felt worth it.  All the training, all the communication about LCHADD, all the fundraising...and then seeing Christopher and knowing that only good could come out of all of this...and knowing that he will be effected by the goodness.

Thank you to every friend, family member and acquaintance who has taken the time to lovingly read our blog, learn more about LCHADD and donate money to Christopher's metabolic clinic.  As of this Tuesday, with your help, we raised $9,760.  It takes about a week before money is processed, so we are expecting that money donated last week will be tallied up by next Tuesday.  I am excited because I am hopeful that we will have reached our goal!  If you haven't donated and meant to, or would like to, it is still not too late.  You can mail it to the address below or donate on-line at the link on the side. (I know there has been some confusion with the on-line link.  The appeal code for on-line giving is different than the one below but it still goes into the same account.  When you go to the on-line site the direction box will say, "School of medicine" and below it will say "Nutrition Research"...this is all correct!  Sorry about the confusion!  But thanks for everyone's diligence in wanting to make sure your donations go to the correct place!) 
 

And hey, even though the race is over, the fight to help children with metabolic disorders and raising awareness about LCHADD will continue!  So please check in and continue to read our blog and pass it along to friends!  Knowledge of FODs, their struggle and process will only better their care!  I have several more post ideas brewing...that will include cute pictures of Christopher (in case you need something to lure you in....lol)... I will be posting soon!  Much love!  ~Steph, Ryan and Christopher