Monday, June 2, 2014

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

Piglet was born with a metabolic disorder called MCADD, 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 MCADD 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. 

MCADD 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 MCADD,  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 MCADD 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 MCADD is a baby, they have different sleep rules. We didn't get much sleep her first year of life because an MCADD 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 MCADD. 

The biggest concern with MCADD 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 MCADD gene we will have a 1 in 4 chance of any of our children having MCADD. 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 MCADD 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 MCADD. It was hard to wait to hear if she did have MCADD and nerve wrecking, but we were also confident in our parenting skills if she did indeed have it since we were already parenting one MCADD 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 MCADD 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 MCADD people and FOD people. She has met other kids with MCADD 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 MCADD journey she has decided she wants to be a doctor so she can help other kids! If you would like to read more about MCADD and FOD's a fellow MCADD 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