Friday, April 17, 2015

Planning a Family Vacation (or Not) #FPIES #FoodAllergies #Disney

Before our youngest was diagnosed with FPIES, planning a family vacation just involved the usual stuff. Plane tickets, car rental, hotel, and spending money. Now that she's no longer a baby and eats a combination of specific solid foods (no corn, soy, dairy, rice, wheat, rye, oats, etc.) and special formula, even thinking about planning a vacation freaks me out. My initial thoughts are:
1. Where can we go? It can't be too rural in case she has a reaction.  It can't be somewhere that doesn't have adequate healthcare. It must be somewhere that a hospital is close by and we can easily reach by car just in case.
2. How do we get there? If we have to take a plane, then I have to figure out how to pack her food that will keep through airports (security, yikes!), plane rides, etc. Then, I have to think about EXTRA food just in case, and even more EXTRA food, just in case again. Not to mention that she requires formula and bottles and her formula has to be refrigerated once opened.
If we take a car, I have the same worries. She can't eat a restaurants, so add on the additional issue of worrying about restaurants having a "no outside food" rule and refusing to serve the rest of our family (yes, this happens).
With both options, I have limited space (or carry-ons allowed), so that's another dilemma.
Best bet? Rent an RV...time consuming and expensive....not to mention, our middle child tends to get carsick.
3. Where do we stay? It has to be somewhere with a decent kitchen. Since we have to prepare her meals ourselves, we need at a minimum a mini-fridge and microwave.  That's basically like the "roughing it" version for us! Ideally, we would have a full size fridge and stove so that we could buy stuff when we get there and not have to ship and/or carry tons of frozen/perishable food with us. Basic hotel rooms are out. Again, added expense.
4.What do I need? Well, besides obvious stuff, I need plenty of her special formula (and then some) as well as the note from her doctor explaining her condition and information on the closest hospital.
5. Fears! What if she has an acute reaction mid-air or in the middle of nowhere and needs medical attention? What if we can't find a restaurant that will allow us to bring in her food? How will my other kids feel about her and the impact she has on our family vacations, despite our best efforts to blend her in with the rest of us? What if she has a reaction and the hospital we take her to doesn't know anything about FPIES and questions it and refuses to give her what she needs immediately?
After a good bit of research, we have come across a few options.
1. Walt Disney World: This is the number one vacation destination in the United States that caters to food allergies.  This is the ONLY place I have found that is known to be able to serve FPIES kids safe food without cross-contamination issues. It's also one of the most expensive places in this country we could go on vacation....
2. Rent an RV: In this scenario, the good thing is that RVs have kitchens and we could easily prepare and travel with everything she needs. It saves us the hassle of having to find accommodations with kitchens.  However, it's still expensive to rent one, and so is the gas.  And there is that whole "What if it breaks down in the middle of nowhere?" fear.
3. Vacationing Close to Home: This would involve renting a cabin (in a not so rural area), or hotel suite somewhat close to home (under 2 hours). Honestly, this would be fun but for me, it seems a bit pointless to pay to sleep somewhere else close to home. Definitely more budget friendly and feasible for us.
4. Stay-cations: Right now, this is the ideal situation for us.  It requires only a little bit of daily prep of meals to bring with us and by night time we are all nestled back into our home. It's also the most cost-effective.
So, there ya have it.  When it comes to have a child with a rare food intolerance syndrome (FPIES), planning a family vacation is extremely complex and stressful.  Hopefully she will start to outgrow it by the time she is 3-4 and we can start planning vacations more easily.  Until then, it's likely Disney or home. 
Read more about our FPIES adventures here.
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Wednesday, April 15, 2015

Sometimes Blood Is Nothing More than a Biological Link. #divorce #reallife

All my life I have heard people say the phrase "Blood is thicker than water" in reference to the importance of respecting family ties and family coming before all others.  At 31 years old, I have learned that this simply isn't something which isn't always the case.
A little background about my life:
I am an only child.  When I was very young, my parents divorced and by the time I was 7, they remarried other people and lived 400 miles apart from one another. This meant, that I spent the school year living with my mother and stepfather and school holidays and summer vacation with my father and stepmother.
The man my mother married is an amazing, loving, patient and kind man who didn't think twice about loving me as his own child.  Honestly, I could fill a novel with the respect and love I have for this man.  He stepped into the role seamlessly and effortlessly and never looked back.  I have always felt like he loved me as though biologically I am his. He was the father figure that every little girl needs in her life.
On the other side, the woman my father married is not this way. For as long as I can remember (back to age 5 or 6), she treated me like something that was just a nuisance. It started with her saying things like "Why are you crying for your mommy?!" the first summer I spent away from my mom (again I was 7).  She would tell me lies. I'll never forget the moment they sat me down on the couch to tell me the "truth about my parents divorce". Every moment I can recall, she would force me to speak poorly about people I loved and cared about. During one of the first summers I spent with them, I refused to eat anything hoping they would just send me home to my mom.  This led to cold shower punishments and hurtful name calling.  It wasn't just me she was nasty with, it was anyone whom she felt threatened by.  It was the neighbors, especially if I wanted to spend time at their house instead, or my father's workers because ordering them around made her feel superior. Her behavior continued as I grew up.  I learned to "survive" my time there by just agreeing and pretending to be someone I wasn't.  I wasn't allowed to like country music or talk about my school. When I became a teenager, I decided I wanted to spend some of my summer like my friends and stay at my mom's house half of the time so that I could feel "normal". My stepmother's response? She called me a bitch on the phone (I was 14).
When I graduated high school, they drove the 400 miles to be there, but not without saying to me "You're brainwashed by your mother and that's why you are going to college in that state instead of ours." And to drill this point home more, they refused to help me financially with school. After college, I moved across the country and didn't tell them until afterwards because I knew they wouldn't have anything nice to say. I met my now husband and only took him there a few times, praying they wouldn't scare him away. On the night before my wedding, my father called me crying at 2 a.m. because she was angry and lashing out at him about something with my wedding.
A few months and "incidents" later, I made the decision to stop calling them. Why was I putting so much effort into being treated so awful? I hung up the phone early February 2009 and not once in the last six years has it rang (my # hasn't changed). Since then, I've made no effort to contact them. Why? Honestly, it isn't because of all the hurtful things this woman said and did to me over the course of my lifetime. It is the fact that while all of this was going on, my father, the man that I am half of, my originally designated protector in life, someone that I love so deeply, just stood there and watched and allowed it to happen and even participated. That asshole and coward, stood there like there was nothing he could do about it. He let her do all of it to his child, his ONLY child for over 20 years. Not once did he stand up to her on my behalf, not one single time and I'm not sure I'll ever forgive him.
It's been over 6 years.  And not a single year have I regretted this decision.  It wasn't a decision I only made for myself, it was for my new husband and our future children. Because never, ever in my lifetime will I allow my children to be exposed to this woman. I am their protector, just as my father should have been mine, and no one will hurt my children like that woman hurt me.
And this is how I have learned that sometimes blood is nothing more than a biological link
I believe this:
“Being genetically related doesn't make you family. Love, support, trust, sacrifice, honesty, protection, acceptance, security, compromise, gratitude, respect and loyalty is what makes you family.” ~Unknown

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Wednesday, April 08, 2015

Are You an Organ Donor? Online Registration for Every State #donatelife #organdonor #savelives

On Facebook, I follow a page of a little girl who received a heart transplant at 45 days old.  She falls into the lucky category of successful transplant recipients.  Her mother recently posted this article to the group and it made me wonder how many people out there don't know how to become an organ donor but want to? How many know don't realize how easy it is to do and how it can save a single or multiple lives upon their death?
Personally, I know I am a registered organ donor because I want my organs to help as many people as possible in the event of my death, whether timely or not. I feel like it's such an easy thing to give back to our society when I no longer need my organs.
Registering to become an organ donor can be done by simply checking the box when you first obtain or renew your state driver's license.  If you don't need to go into your local Department of Motor Vehicles anytime soon, you can do it by logging onto your state's organ donation registry website. It takes just a few minutes to complete. Once you register, no one can override your decision. This is a decision that you decided to do with your body upon your death. Yes, it's awful to think of your family grieving over the loss of you, but what if you could bring another family the gift of life? It would not only benefit the other family, but provide your family with a shimmer of light in all the darkness. One last selfless act that will help others long after you are gone. To me, it's the obvious choice!
Ready to Register? Below is a list of the online registry sites for all 50 United States as well as Washington, D.C. 
Alabama 
Alaska 
Arizona 
Arkansas 
California 
Colorado 
Connecticut 
Delaware 
Florida 
Georgia 
Hawaii 
Idaho 
Illinois 
Indiana 
Iowa 
Kansas 
Kentucky 
Louisiana 
Maine 
Maryland 
Massachusetts 
Michigan 
Minnesota 
Mississippi 
Missouri 
Montana 
Nebraska 
Nevada
New Hampshire
New Jersey
New Mexico 
New York 
North Carolina 
North Dakota 
Ohio 
Oklahoma 
Oregon 
Pennsylvania 
Rhode Island 
South Carolina 
South Dakota 
Tennessee 
Texas 
Utah 
Vermont
Virginia 
Washington 
West Virginia 
Wisconsin 
Wyoming
Washington, D.C.
I encourage you to sign up as you could save a life even after yours is over.  Please share with your family and friends and encourage them to sign up as well.  Just a few minutes can give some days, months, years and much more! 

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Friday, April 03, 2015

Shaving Cream Easter Egg Activity! #Easter

A few days ago, I came across another blog that had instructions for dying Easter eggs using shaving cream.  Last year, I decided to try out the Kool-Aid method and we loved it. So, I was really excited to try something new this year! Also, our son came home with a fake paper egg he had painted in preschool and I was able to ask his teacher where she got them and pick up two dozen of them at the local Walmart.  Since every year, I despise the task of hard-boiling eggs and I didn't want to have to throw away all the eggs because the shaving cream would go through the shell and make them inedible.
Supplies:
-1 Can of Shaving Cream (1 can per a dozen eggs)
-Food Coloring
-Multiple Baking Pans ( I recommend glass or disposable aluminum)
-One Dozen Paper Eggs
Instructions:
Squirt about an inch of shaving cream into a baking pan.  Put a few drop of different colors of food coloring into the pan.  Use a butter knife to swirl the shaving cream and food coloring around.  Then, just place the egg in there and roll it around until its fully covered. Let dry aside for a few minutes and then wipe off the shaving cream.
The kids really loved doing this and had a great time getting the eggs all covered.  I admit that going into this, I thought it would be less messy than the cups of dye approach, but both our nanny and I agree it may have been more messy.  It didn't matter, because all three of the kids could easily participate and had a great time! I highly recommend this for any age. Check out our finished products below! Happy Easter!
Tips:
-Make sure your work surface is covered with a plastic tablecloth or paper bags.
-Give the kids plastic spoons to move the eggs around and swirl the colors.
-Buy the sensitive shaving cream so that it's easier on their skin and less odor.
-Just put a few drops of each color and swirl just a little.  Don't mix too much or you'll get a solid color.
-Don't let the eggs sit too long before wiping off the shaving cream or you'll get water spots.
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I Just Want My Kid to Eat Pizza and Cheeseburgers! #FPIES #FoodAllergies

Most days, I can easily deal with our youngest having been diagnosed with FPIES and having to avoid a ton of major food components including wheat and dairy.  However, a few days here and there every month, I struggle.
Sometimes it's triggered by little memories, like when we could easily spontaneously go out to dinner as a family. Sometimes, it's caused by much greater thoughts like "What if this lasts forever? How will she ever safely go to a child's birthday party and feel normal?" No matter what causes the struggle, I find myself wishing very loudly inside my head "I just want my kid to eat pizza and cheeseburgers!"
I remember with each of our older two, getting excited when they passed that one year mark and could eat meals anywhere and drink regular milk. The freedom of not having to worry about if we were going out over lunch because we could just order them something off the menu.  This time around, that freedom doesn't exist.  It's been stripped from us without even a warning.  In order to go out, we have to pack a full meal and since most of it's homemade and perishable, it's not like we can spend the day running errands and then stop at lunch somewhere.  When we visit anyone, it's like packing half the kitchen because I don't want to be an hour away and run out of food for her. Never came are the days of just grab a few diapers/wipes and go. Those little freedoms we so easily took for granted with our older too have yet to come.
 And no, my feelings about her having FPIES aren't always as specific as "..pizza or cheeseburgers", but they are much the same. I often deal with the burden that something I did during labor and her birth likely caused this (there is a correlation between the broad-spectrum antibiotic I had during her labor/delivery and FPIES.) Something I did has cost us financially and emotionally as a family. I hate the feeling that I'm drowning in a sea of special formula, doctors, medical bills, insurance claims and can't get up for air. I'm tired of watching every crumb that hits the ground or reminding our older children not to leave snacks and milk cups around. On the really hard days, I get to the point of frustration and I think "Why can't she just be normal?!"
I know we are very lucky. On the spectrum of kids diagnosed with FPIES, she is on the more easily manageable end.  We are lucky, because there is a very good chance by 3-4 years old she'll start outgrowing FPIES, maybe even sooner. We are extremely blessed to have an amazing support staff of family, friends, doctors and specialists alongside us on this journey. Other than FPIES, our sweet little girl is healthy, intelligent and full of life and most days that's how I feel.
This blog is about me being able to be real with all of you. The fact is some days are harder than others.
Thanks for listening!
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Wednesday, April 01, 2015

Coloring Books for Adults?! #stressrelief #fun

Do you ever find yourself picking up a crayon and coloring a book along with your children? When you do, do you find that you instantly feel relaxed and happy? Recently, I sat down with our two oldest to do some coloring and then, before I knew it, I carefully coloring a picture of Mickey Mouse right beside them.  It was nice to take some time to do something that didn't require a lot of thought and just came naturally. I am not an artist by any means, but I do enjoy coloring inside the lines of a picture.  
*The information in this post is cited and based upon my internet research. Please use your best judgement when choosing a bicycle and helmet for your child. This post may contain affiliate links which help us run this blog. Thanks for reading!
This led me to do a quick Google search and I found this article posted in October 2014 by Huffington Post, about how coloring isn't just for kids. The article states "When coloring, we activate different areas of our two cerebral hemispheres, says psychologist Gloria Martínez Ayala. "The action involves both logic, by which we color forms, and creativity, when mixing and matching colors. This incorporates the areas of the cerebral cortex involved in vision and fine motor skills [coordination necessary to make small, precise movements]. The relaxation that it provides lowers the activity of the amygdala, a basic part of our brain involved in controlling emotion that is affected by stress.""
After reading this, I decided to look into coloring books made for adults and I came across tons of awesome ones on Amazon.  Here are some of my favorites that I plan on purchasing and putting on my Amazon Wish List!
Also, since you are an adult, go ahead and get yourself a fancy pack of gel pens to do all your coloring!
I highly suggest you stock up your home library with a few of these for the next time your toddler drives you crazy or your boss treats you poorly.  They are great way to destress at the end of a long, hard day! They also make fun and unique gifts for everyone in your life. Enjoy!


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Tuesday, March 31, 2015

"There's No Baby in There" - Experiencing a Blighted Ovum: Pregnancy and Infant Loss Awareness #pregnancyloss

*I started this post last October in honor of Pregnancy and Infant Loss Awareness Day 2014, however, I wasn't able to finish it until now*

I'll never forget that moment.  Laying alone on the ultrasound table waiting to see a tiny little bean with a strong heartbeat inside of a sack confirming my pregnancy just as easy as it did with my previous two.  I was excited and nervous all at once. Within moments, I knew that something wasn't as expected. I'm not an ultrasound technician, but I could see clear as day on the screen that there in fact was a very good looking perfectly round sac, but it was empty. I immediately started to tear up. The tech was amazing and explained that it was possible everything was very early on and a fetal pole and yolk sack code appear in the next few days or week.  She took several pictures and measurements and left to give them to one of the doctors. Then she returned to explain that the doctor wanted to explain what was likely happening to me.

Just ten minutes after I walked in, I was being told that since the sac was measuring around 6 weeks, they should see something, anything. She then used a term I had never heard before, Blighted Ovum (BO). Here's a quick explanation from Mayo Clinic: "A blighted ovum, also called an anembryonic pregnancy or anembryonic gestation, occurs when a gestational sac develops without an embryo — often due to chromosomal abnormalities in the fertilized egg."
Some of the characteristics of a blighted ovum can include:
-Presence of normal gestational sac that is either empty or only contains a yolk sac (no fetal pole).
-Strong pregnancy symptoms
-Light spotting and/or cramping.
-HCG increases (rarely doubles) until removed or body realizes it's not a viable pregnancy (as long as the sac is growing, your body thinks the pregnancy is viable until it receives the "signal" that it's not viable or the placenta (that doesn't exist) should be taking over creation of HCG around 12 weeks.
-Tendency to be "extra-sticky" requiring intervention for removal sac and termination of pregnancy.
-Reputation for causing excessive bleeding during natural miscarriage that requires emergency intervention.
I was unable to obtain an ultrasound photo of my own blighted ovum, but here are few images provided for this post by some gracious women from a Facebook support group.
The doctor explained that it was likely I would begin miscarrying at anytime and I could either opt to have surgery to remove it or wait it out.  I choose the later, since we both agreed that I could wait a few weeks and have another ultrasound if I didn't miscarry by then.
I waited..two very long weeks.  It those two weeks, I did experience some very light spotting and cramping, but nothing otherwise. I spent time online researching and came across sites where people had a misdiagnosed BO and went on to have healthy babies.  There were way more like me holding onto hope that this was also the case for me. I was a complete emotional wreck.  At the end of the two weeks, I went back and while the sac had grown by a week, it was still there and completely empty.  I then met with my regular doctor and she and I agreed that based on the known fact that blighted ovums have a higher history of natural miscarriages that cause too much blood loss (they are called "extra sticky"), a surgery to remove it was the best option.  I scheduled it for a week or so later with the agreement the the night before my surgery I would receive a final ultrasound just to be sure.  My doctor and the ultrasound tech happily obliged.  They said they would give me as many as I needed to feel okay about proceeding.
On November, 28, 2012 I went in for my surgery.  This was the very first time in my life I have ever been put "under" or had "surgery" so I was really nervous.  The ultrasound the night before confirmed that the sac was already starting to breakdown and the pregnancy was not viable. That was at least reassuring that I was in fact making the right decision. The surgery was really quick and successful. My husband was there waiting with Reese Cups and a stuffed puppy afterward. I recovered physically over the next week with the help of pain medication and rest.
I was very lucky to have a very good support system, especially my husband, to help me recover emotionally. We spent lots of time just enjoying the two children we did have and the upcoming Christmas holiday.
Looking back over the last 2+ years, I still remember the pain I felt during this experience. Emotionally, I will never be the same, but I have learned that this was part of a life and that, if only briefly, I carried a baby that couldn't survive and a part of me will always love them.
During that difficult time and since then I have been a part of a Facebook group called Angel Moms via Blighted Ovum. When I was going through it, this group of women was absolutely amazing in providing me with support and answers. Since then, I have watched women come into the group who are currently or have experienced the same as me and I have returned the same support to all of them. I have heard stories about how people around them have said "You weren't actually carrying a baby" and made them feel like they shouldn't be sad or grieving. This is why I'm writing this, to spread awareness. No matter what, a baby was conceived and a baby was lost and a woman (and her family) are learning to cope with the reality of this loss. As humans, compassion is what binds us and during this time that's what we should be showing each other.
Many women who experience blighted ovums go on to have one (or more) successful pregnancies. A small percentage will have a repeat blighted ovum and/or miscarriage. And a smaller percentage will never be blessed to carry a child again. We fell into the majority and, less than one year later, welcomed our third child, our sweet little rainbow. 
Resources:
Angel Moms via Blighted Ovum Facebook Group
Somewhere Over the Rainbow Facebook Group (This is for those that are ready to move on and are TTC, pregnant, or have had children after experiencing a blighted ovum).
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Sunday, March 29, 2015

It's Not Mine to Share: One Thing I Won't Post on My Blog #bloggerthoughts #respect

Every single day on social media we come across stories.  Stories about things that are so sad that we can hardly believe them.  Parents who make the mistake of leaving a room for a minute and end up losing their child. Car accidents that take lives too soon because someone looked down at their phone.  People who make mistakes and pay for it with the loss of a loved one and/or another family loses someone they love. Over and over again, my heart breaks. And as it breaks, I think about how every single thing posted on the internet will be there forever and how these posts go viral across social media and the internet and the people suffering likely have to relive it EVERY SINGLE TIME they come across it. And my heart breaks again. While I believe in and support social media and the internet and I support learning from other's mistakes, I will never, ever share one of those stories on my blog and/or turn it into a post.
Why not? Because I can't even begin to think about contributing any further to the suffering these people are enduring. I don't want to add one more place for them to be reminded of what has happened to them or the mistakes they made. Not one more everlasting Google search result. I'm not interested in personally gaining by linking to their story in a post. I's not my story to tell or use to gain anything from. Because as much as you can say you aren't pointing your finger at someone else's mistake, when you use it for personal gain, you are.
Now, does this mean that when I see a story about a young child who wasn't restrained in a child safety seat properly and was injured or killed as a result, I won't think about writing a child safety seat post about proper use? No, of course not.  But, what you won't see in that post is any reference to a particular story.  It wouldn't add anything to my post and will only negatively impact their family.  I mean, imagine that I reference a current event on the subject and my post happens to go viral? That means it would be seen all over social media by thousands (possibly millions), and more than likely by those who are personally suffering as a result.
I'm sure by this point in my post, you are starting to think about how spreading news stories is a form of prevention of it happening again. Well, yes, this is true.  But, again, it's not my story to share or use. However, I am always willing to host any guest post from someone whose story it is. The parents that want to use their tragedy to raise awareness are more than welcome to ask me to share their story on my blog. Awareness is huge for the prevention of accidents, especially to children, so I am always in support of it, as long as it's something that the affected parties want and agree to.  Otherwise, I will continue to provide you with important safety information for your families without linking to specific events. Those you can find on your own by "Googling".
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