Monday, June 2, 2014

Piglet Was Born With a Disorder Called MCAD, What is it?



Piglet was born with a metabolic disorder called MCAD, Medium Chain acyl CoA Dehydrogenase Deficiency. It falls under something called an FOD, Fatty Acid Oxidation Disorder. The hubby and I had no idea we were both carriers of this disorder and didn't know we passed MCAD to her, until her Newborn Screening results came back at 3 days old. The newborn screening saved her life, it's scary to think she could have died in those 3 days before we found out and we were educated on how to care for our sweet girl. Early on it was a whirlwind of information, labs, testing, doctors, genetic counselors, nutritionists, more information and telling family. I remember coming home from the very long first appointment with the entire medical team and just sobbing while holding her. I was so upset something was wrong with my brand new baby and she was going to have this life long disorder to deal with. 

MCAD is a disorder in which your body is unable to break down fats for energy. Normally, fat is broken down into energy by "enzymes." This energy keeps your body running whenever it runs out of its main source of energy, a sugar called glucose. In MCAD,  a very important enzyme for breaking down fat, the medium chain acyl coA dehydrogenase enzyme is missing or doesn't work correctly. This means that people with MCAD can't break down fat for energy when they run out of glucose. 

This is how I explain it: a normal person will burn whats in their gut for fuel and then they have glucose as the reserve for backup. Piglet will burn whats in her gut and then would crash because she has no back up or reserve. This means she has to eat more often and has a special diet. She can not go past 4 hours during the day without a snack and at night she is allowed to go 11 hours if she drinks her "shake" before bed. Her shake contains cornstarch mixed in with milk, its a slow release sugar which allows her body to slowly keep fuel through out the night allowing her to sleep with out risking a crash. She started her "shake" at 1 years old. When someone with MCAD is a baby, they have different sleep rules. We didn't get much sleep her first year of life because an MCAD baby has to eat much more often than the average infant. She also takes medicine 3 times a day that helps her body work properly. Since she is missing the medium chain enzyme, she cannot break down medium chain fats. If she were to eat something that was a medium chain fat, it would go directly to her organs which in the long run can build up and risk fatty organs or organ failure. Some kids also don't feel well or throw up if they eat too much fat. We were told coconut and avocado are big no no's on the list because they are medium chain fats. She is also on a heart healthy diet, low fat, high carb. Most of her meals are 4 grams of fat or less. She was also diagnosed with Celiac Disease at 3 years old so is gluten free but that has nothing to do with MCAD. 

The biggest concern with MCAD aside from diet is when they become sick. Even if its a cold it can become dangerous quickly. An average child is just fine if they don't want to eat or drink when they are sick. With Piglet she needs to keep her fuel going so if she isn't eating or drinking (juice or Gatorade) enough, things can turn into a life threatening situation quickly. If we can't get enough in her or if she is throwing up she has to go into the ER/Hospital for a special IV to keep her sugar levels up. Now that she is older (7) she understands that if she isn't getting enough food or drink when sick she has to go into the hospital for her special IV. Sometimes this helps because she will try harder to get some fuel in her body, but sometimes we have to go in no matter what. She doesn't like the ER because they always have a really hard time getting the IV in her but she doesn't mind the hospital once we are up in her room. There are a lot of fun things for her to play with and we have been there many times so we have some favorite nurses. 

Since my hubby and I are both carriers of the MCAD gene we will have a 1 in 4 chance of any of our children having MCAD. We have added to the family with Piglet's sister "Squeak", she is now 4 months old and Piglet is so thrilled to be a big sis! Since we knew ahead of time this time we were able to rush the newborn screening results to make sure we knew faster if Squeak had MCAD like her big sis. We also supplemented with formula until my milk came in to make sure she was getting the proper fuel in case she did have MCAD. It was hard to wait to hear if she did have MCAD and nerve wrecking, but we were also confident in our parenting skills if she did indeed have it since we were already parenting one MCAD child. We found out she does not have it. It was a relief and nice to know we could get a little more sleep this time around but it was also really hard on Piglet. She feels alone a lot in her MCAD journey and we discus it on a regular basis. She is much more aware of it all now that she is in 1st grade and see's how she is different than her classmates. Thankfully there are great resources out there to help us all out. There are great support groups, on-line support groups, and get together's with other MCAD people and FOD people. She has met other kids with MCAD and I am sure as she gets older it will be a great resource for her to talk to them about their struggles in life. Each year brings different challenges we have to sort out and work through but she is one tough kid, loves life and is really great at being aware of her health and what she needs to do to take care of herself. I couldn't be more proud of her! Through her MCAD journey she has decided she wants to be a doctor so she can help other kids! If you would like to read more about MCAD and FOD's a fellow MCAD mother wrote a fantastic article about it. It's called The Challenging World of Fatty Oxidation Disorders. I encourage you all to take a look at it and learn more about it! Thanks for reading! Click HERE for the article 

Friday, March 7, 2014

What To Ask At A Daycare Interview



I ran my own licensed child care out of my home for a while before I stopped to focus on getting my health back on track. I get a lot of questions from people about daycare so came up with a question list.Hope it helps you out when you are interviewing them looking for a good fit for your child. 


  • Are you licensed
  • How long have you been in business 
  • How many kids do you have and what ages
  • Are you a part of the food program, if not what do you serve 
  • How many meals are provided in a day
  • Is baby food and formula provided 
  • Do you change to whole milk at 12 months old 
  • What do the kids nap in and where 
  • Do you have animals, have they had their updated shots
  • Do you have a contract 
  • What is your rule for giving notice if we decide to leave daycare
  • Do you take a paid vacation 
  • Do we get any free sick or vacation days
  • Do you have a sub. if so is she legal, background check etc
  • What classes have you taken? Are you SIDS/Shaken baby certified and CPR/First aid
  • Do you do field trips, if so have you taken the child safety restraint class
  • Do you have references
  • What is your sick policy
  • Do you use a curriculum 
  • Do you go outside daily, whats your rule for weather temps
  • Do you use a pool 
  • When putting babies to sleep do you follow the sleep on their back rule, nothing in crib, no blankets etc
  • Whats your rule on pacifiers
  • What do you do with infants when you do crafts 
  • Do you use monitors at nap time
  • Do you use web cameras, security cameras 
  • Does pricing change with age 
  • Whats your drop off and pick up policy
  • Do you do daily status sheets to go home with child
  • Do you provide wipes 
  • Whats your potty training policy 
  • Do you do a newsletter or monthly calender 
  • Do you do cash or direct deposit 
  • Do we pay weekly 
  • Do you give receipts for taxes and how often 
  • Do you do full time and part time care
  • What are your hours of operation 
  • Thursday, January 30, 2014

    Ten Free Valentine Print Off's

    Valentines day is just around the corner and the kids get to have their fun Valentine exchange at school! Are you ready? I found a bunch of cute Valentines on Pinterest and thought I would share my favorites with you all! Here is a list of really cute and fun Valentines that are FREE you can print off yourself! Enjoy and don't forget to fill one out to give to your kiddos!!


    "Orange You Glad" Valentines
    Steph over at Crafting in the Rain is providing this cute freebie! Click HERE for the link to her page! I like how this one works for boys and girls and who doesn't love these oranges! They are also gluten free so safe in our house!! 

    Despicable Me 2 Valentines

    I found this one on Dollar Store Crafts. These little guys are so popular right now that they are sure to be a winner with any kiddo! I like how easy they are, all you need is a sucker to stick to them. Click HERE for the link to get the printable! 

    Friend you make me laffy!

    Tutto Bella Blog has a few printable Valentines to pick from but this one is our favorite! Laffy Taffy is popular in our house because we know its a "safe candy" for our diet restrictions, and its tasty! Head on over the the blog HERE for the printable! 

    You Make My Heart Glow
    Housewife Electric has the right idea with this one! What kid doesn't like glow sticks?! And you can find a pack of 5 at the dollar store for $1 each, win, win! Head on over to her blog HERE to get the printable! 

    Hey Smartie!
    Kim over at Seven Thirty Three has created a few Valentines to pick from. Smarties are also a favorite one around here so this one is our favorite Valentine, and easy to make! Head on over to her blog HERE to see the other printables and to get this one! 

    Frozen Olaf Valentine's
    Olaf is "the man" this winter! Frozen was such a cute movie and now one of our favorites! I wouldn't mind going to see it again. The Idea Room is offering this really cute printable! Head on over HERE and print it off to start creating! 

    What Does The Fox Say?
    Who doesn't know this song?! This super cute fox would be a hit in the classroom! Pink Peppermint Prints and Parties is offering this freebie! Head over to the site HERE to print off this cutie! 

    Monkey Valentines 
    Artsy Fartsy Mama has created these super cute monkey Valentines. I like these because you can attach a variety of things to them and mix and match it up. You could also probably just use the cards plain if you don't want to use candy. Head on over HERE to the blog to get the printables! 

    A Mix Of Cards
    Freebie Finding Mom is offering these cute cards for free. I like these because they are cute, colorful, and you don't have to add a treat to them if you don't want to. They are cute just as they are. Head over HERE to print these off! 

    Hogs And Kisses
    We LOVE pigs at our house so this is a winner in our book any day! The Silly Pearl is offering this Valentine and we love it so much, well because we love pigs!! Head over HERE to print it off and start creating! 


    I hope you enjoy these freebies!

    Wednesday, January 15, 2014

    100 Kids Lunch Ideas



    I found this handy dandy link to 100 Kids Lunch Ideas that would be really handy for school lunch in addition to daycare meals if you run a home daycare! Take a look and get some ideas!! Here ya go, click HERE

     

    Friday, December 27, 2013

    How To Survive A Hospital Stay When Gluten Free




    Piglet has had many hospital stays in her young life due to her metabolic disorder called MCAD, its a kind of an FOD (Fatty Acid Oxidation Disorder) if you feel like looking it up. She was born with it and it will be life long. Before she was diagnosed with Celiac Disease 3 years ago, we were in and out of the hospital every 2 months, it was horrible. At that time we didn't know gluten and lactose were basically poison to her and what was causing so many hospital stays in the first place. When ever she gets a sickness like the flu and is throwing up she will always have to spend time in the hospital, so its normally at least once a year. Knock on wood, I think we have made it somewhere around 9-12 months now since our last stay. We definitely know how to survive the hospital with such a restricted diet and thought I would share some tips! Its been on my mind lately since baby #2 is on her way soon and since I am gluten and dairy free, I need to prepare to bring all my own food since I also can not eat a thing at the hospital. I also have a ton of food allergies so more restricted than Piglet is in some ways. 

    Most of the time we don't have much of a warning when we are heading to the ER with Piglet. So usually when one of us is calling the hospital telling them we are coming and to prepare her special IV fluids we are also running around the house packing a quick bag and grabbing snacks we have available in the cupboard and fridge. We know that will get us through a few hours at least. Items we tend to grab are: Gatorade, popcorn, crackers, cereal, and fruit. Quick stuff that has some carbs for Piglet if she can eat at all once the IV is in. The snacks are also for me because I can't eat anything there and there are no options in a vending machine. We are usually in the ER a very long time before being transferred to an actual hospital room upstairs. Most of the time poor Piglet isn't feeling well enough to eat much of what we bring.

    If its not a planned trip and rushed like most of ours, we have to rely on family, friends, each other and food delivery. Usually one of us can go run to the store and get some snacks and easy meals. Luckily the new children's hospital now has a mini fridge and freezer right in the room along with a microwave so that has been really handy. Before they built the new hospital the old one had a family room that has a shared kitchen that we would use. Keep in mind all of those items are shared so they are not safe for people with Celiac Disease and are gluten free. But it still had the fridge, microwave, paper plates, and plastic silverware we could use. I would imagine most hospitals have rooms like that. At the old hospital they had a huge book of restaurants that would deliver food at all hours. This was a life saver because lucky for us there were actually places close by that had safe gluten free choices. Once we moved to the new hospital in a new location we no longer had that option so had to get more creative. Make sure to ask the front desk if they have a list of food places that deliver to the hospital. Its spendy but a life saver when you are tired and stressed out.

    Rely on others to help you, don't feel bad about asking because you need safe food and don't want to feel worse on hospital food that will just make things worse and possibility cause a longer hospital stay! Like I said before, one of us can usually run to the store. If not I ask my mom to bring a bag of items we can eat since she knows what is safe. And just because I like having references so I don't forget things I have created a folder on Pinterest that lists a ton of gluten and dairy free items that are safe and taste good. If I need to tell someone what items are safe to buy, I reference them to look at that folder. Or tell them it has to say gluten free and dairy free right on the item. You could also create a paper folder to keep someplace that lists items you can have so someone can reference that if they need to.

    Easy things to pick up last minute:
    • Crackers
    • Popcorn
    • Cereal
    • Fruits and Veggies
    • Lunch Meat
    • Drinks
    • Bread
    • Salads
    • Oatmeal packs
    • Prepared Noodle Packs that you microwave
    • Rice Packs
    • Yogurt
    • Fruit Cups
    • Beef Jerkey
    • Nuts
    • Nut Butters and Jelly 
    Some hospitals actually have a gluten free menu from what I am hearing from other people so make sure to ask. It would be so nice not to have to worry about going and getting your own food if you really don't have to and can trust the food staff! Our hospital does not do gluten free but we have gotten some things from the menu and haven't had a problem. Piglet sometimes gets jello, rice chex in the little box so its sealed and we know its safe, Popsicle, sorbet, fresh fruit, and veggies. 

    As for my upcoming hospital stay, it is planned since I am having a baby so I have the advantage to plan ahead and pack as much food as I want. I will probably mostly go off the list above since its easy food to bring and prepare. But I can also plan some fridge or freezer meals if I want and have those ready to go so I can just grab them as we run out the door. That way I can just microwave them at the hospital. I plan to make some crock pot meals ahead of time and then just break them up into smaller portions to freeze so its easy to bring with. Now to actually remember to grab them when in labor! I also plan to call the hospital so I can talk to a dietitian, maybe the hospital would be willing to order some gluten and dairy free items, it doesn't hurt to at least ask! This would be easier if it was an actual scheduled date vs a two week window where I may or may not go into labor. So easier for those of you that have a planned surgery etc. 

    Aside from the food side of being gluten free, always make sure the medical team is always giving you gluten free meds. Some are not safe, so make sure to verify they are so you don't get sick! You can request a wrist band that says Celiac Disease. Hope this helps a little! 


    Here is Piglet when she was younger at the hospital. Going around and around and around the children's unit at 2am

    Sunday, December 22, 2013

    Pumpkin Granola Bars



    Finding gluten and dairy free granola bars in the store that don't break the bank is a joke! Sure there are some to pick from, and some taste pretty good too, but one box with 6 granola bars inside cost way too much money!! You can make them at home for less cost and no yucky preservatives in them. And you get way more for the cost!! Win, win! I have been looking around the web and trying some different ones, some work well and some don't. This one is a favorite in our house and they stay together pretty well. I found it here at My Whole Food Life. The only thing I had to change was use pear sauce instead of apple sauce since I can't eat apple. 

    Ingredients:

    • 2 1/2 Cups gluten free oats
    • 1/2 Cup pumpkin
    • 1/4 Cup unsweetened apple sauce (I use pear sauce)
    •  1/3 Cup maple syrup
    • 1/2 Heaping tsp Cinnamon 
    • 1/4 tsp Ginger
    • 1/4 tsp Cloves
    • 1/4 tsp Nutmeg 
    • 1/4 tsp Salt 
    • 1/4 tsp Baking Soda 
    • 1/4 tsp Pure Vanilla Extract 




    Preheat oven to 350 degrees. In one bowl mix all dry ingredients. In another bowl mix all the wet ingredients. Combine the two and make sure its all really well coated. Line a baking pan with parchment paper and push down the mixture really well with a piece of the parchment paper. Make sure to push it down well so it stays together when you cut it into bars. Bake for 20-25 minutes, let cool all the way before cutting into bars. Store in an air tight container, I put ours in the fridge. 




    Enjoy! They make a great snack to send to school! Piglet requests these for her morning snack at school and I am happy to pack such a healthy snack that will help her keep focused at school! Yay for brain food!

    A note: Trader Joes is a great place to purchase gluten free oats and also the pear sauce. The oats come in a large bag and are inexpensive and the pear sauce comes in pack of 6 individual cups. 


    Gluten And Dairy Free Chicken Nuggets


    I found a great recipe on the web for gluten free chicken nuggets. I altered them to also be dairy free and you can't tell a difference at all! Piglet and I made them for dinner tonight and they turned out great! Here is the link to where I found the original recipe, click HERE 

    I did everything the same aside from using the cheese and seasoned salt.

    Ingredients:
    3 cups Corn Chex cereal

    1/2 teaspoon salt

    1/4 teaspoon paprika

    1/8 teaspoon garlic powder

    3 tablespoons butter or margarine, melted

    1 tablespoon milk( I used almond milk)

    1 lb boneless skinless chicken breasts, cut into 1x1-inch pieces 
     
    Directions:
    1. Crush cereal, I put it in a zip lock bag and rolled over it with a canned food item from the pantry until it was crushed. 
    2. In a bowl stir together all the dry ingredients. In a small bowl combine the milk and melted butter/margarine. 
    3. Take chicken pieces and cover in liquid ingredients and then put in bowl of dry ingredients and coat and place on cookie sheet. 
    4. Bake 9 minutes, flip chicken pieces and bake another 9 minutes or until no longer pink in the middle! 
     
    Here they are after being baked, made quite a bit!
     
    Simple as that! Enjoy these healthy homemade chicken nuggets! It's so nice to eat healthy non-processed meals knowing exactly what is in them!!