Friday, February 28, 2014

Rare Disease Day and Happy Birthday Aunt Kiki!

 Today is a special Amy says it wasn't a day that really meant much to me until I met her and her little sweetheart Caroline. Amy and I met through a mutual friend and really "hit it off." You know those people you know you will get along with from the beginning!?!? Ya, she is one of them. We were bridesmaids in a wedding for one of my best friends last summer. We have remained friends and continue to chat on a weekly basis. We have more trips planned to spend time together and I can't wait to see how our friendship grows. Amy and her husband have a little girl VERY close to the same age as Sloane. Please read about their journey...
Today is February 28th and for most people this day means nothing. February 28th started having significance in my life two years ago when my husband and I welcomed our Caroline Grace into the world. February 28th is Rare Disease Day.

When I was pregnant, people always told me that I will forever remember every little detail about the day your children were born. They were right. I remember every detail and always will. I remember holding her and counting ten little fingers and ten little toes. She was perfect. A blessing sent to us from God that neither my husband nor myself felt like we were truly capable of deserving.

It is funny though, because as much as I remember February 21st, 2012, the day Caroline was born, I remember February 24th , 2012 even better. On that day, I got a phone call that changed our lives. I received a phone call telling me that Caroline failed the newborn screen for Phenylketonuria (PKU). First of all, I couldn’t even say the word back to the nurse on the phone, let along know what in the world she was talking about. I just replied “What?” She then proceeded to tell me to take my baby to the University Hospital as fast as I could for additional testing. You can only imagine the thoughts that were running through my head. Fast forward to that evening and we did indeed find out that our perfect, ten fingers, and ten little toed baby girl had PKU.

PKU is an inherited disorder that causes a person to be unable to process a specific part of proteins called phenylalanine, which is present in most foods. Without a closely monitored diet, phenylalanine (or phe, as the PKU community calls it) will build up in the blood stream causing severe brain damage. Because protein is crucial for growth and development, special phe-free formula is given from the point of diagnosis. Individuals with PKU need to drink this formula for their entire lives to get the necessary protein they need. PKUers cannot eat any meats, grains, soy products, fish, dairy, and beans; aspartame, the artificial sweetener commonly sold as NutraSweet and Equal, is also forbidden as it contains high levels of phe. The PKU diet is mostly fruits, vegetables, and very expensive medical foods, and all portions have to be carefully weighed out.

I wish I could go back and write a letter to myself two years ago. I would tell myself that watching your baby get pricked for blood work on a weekly basis would get easier each week. In fact, after the first five months you finally leave the hospital without shedding a tear. Then there is that time though, the week before Caroline’s second birthday, and she wants to sit in the big chair by herself and sticks her arm out smiling so proud of herself. I would tell myself that you will cry about this, but just because you cannot get over how tough your baby girl is becoming. I would also tell myself that it is not that big of a deal taking a scale to restaurants and over to friends houses. In fact, weighing her food has become such a natural way of life for Caroline that she knows you have to weigh her food before she eats it. I would tell myself to relax because Caroline has an amazing Genetics Doctor, Dietician, and Genetics counselor. In fact these people are so amazing, that they have become a very integral part of you life. I would tell myself to not worry about the overwhelming price of her medical foods and formula, somehow we make it all work out financially. I would also tell myself that there is not a day that will go by that you do not worry about her future and about her growing up “different”, but that just comes with being a mom. One of the biggest things I would go back and tell myself two years ago is that one day, you will look at Caroline and realize that it will be OK if your next child has PKU (we have a 25% chance each time we have a child), and that you will realize one day that it could be so much worse.

I will forever spend my life advocating for this rare disease. PKU occurs in 1 of 10,000 to 15,000 newborns. There is a lot of financial stress that comes along this disorder. Luckily for Steve and I, once we meet our deductible, which is still around $4,000, our insurance picks up the costs of her formula and most of her foods. I know others with PKU aren’t as fortunate. My hope is that one-day formula and foods are available for anyone with this rare disease. I also hope that I am alive to see them find a cure. I am extremely grateful for the newborn screening that saved my daughters life. If it weren’t for that test, our daughter would have developed irreversible mental retardation.

So here is to Rare Disease Day. To the 7,000 Rare Diseases. To the 30 million affected. And to the 95% without approved treatments. And here is to my perfect little girl. 

Today is Feb. 28th so can't forget to say Happy Birthday to a very special Aunt as well...Aunt Kiki!!!! We love you and can't wait to celebrate today!!! Thanks for being such an important part of our "little's" lives!!! 

Thursday, February 27, 2014

March Bucket List

I think I say this every month but, I can't believe I am already doing another bucket list. ;) It's crazy how times flies and I am ready for Spring to be here! I encourage you to take a second and grab this image, create a "bucket list post," and please link back to Erika and I somewhere in your bucket list. It's been fun and even helpful to make a list of fun and even serious to-do's for the months. You can read a few of the past lists here: Oct. , Nov. , Jan. , Feb.

This month I am soooo ready for Spring. I am excited to get outside with the kids and celebrate Sloane turning TWO!!!!

My list for this month...
 #1. GET PREPARED and have Sloane's birthday parties. Yes, 2 parties...since family is 2 hours apart it's easier if we just have 2 parties. ;) It makes for a fun planning coming soon.

#2 Finished a few items for my Sister who will be having her #2 baby at the end of March...;) 

#3 I am embarrassed to even admit that we are still working on the upstairs bathroom. It's been 2 months and we aren't finished. :/ I want March to BE THE MONTH of completion. We shall see...

#4 Finish our Family 2013 photo book...I am 1/2 way finished but the photo books are 50% off so I would love to be able to take advantage of that amazing deal soon!  

#5 Watch LOTS of March Madness basketball...I don't really watch college basketball on a regular basis but I LOVE watching the tournament. I will have it on all day long! ;) I can't wait for it to start!!

What's on your March Bucket List?

Wednesday, February 26, 2014

What I Wore...

I am super excited to link up with the pleated poppy today with "what I wore Wednesday." I haven't ever participated before I am a newbie. ;)  I tried to remember to take a picture each day of what I wore and after looking at them...I am sort of embarrassed to post them. First, I don't have a good mirror to take my pictures in and second, I noticed I love leggings...too much! So...I am sure you will enjoy a little chuckle as you view my WIWW.
MONDAY / toms shoes - BKE jeans - mosimmo white tank - gap striped shirt

TUESDAY / UGG boots - Simply Vera Wang black leggings - mossimo white tank, I think I own 5 ;) - Old Navy sweatshirt

THURSDAY (guess I forgot on Wednesday?)  / yes, I am in a dressing reminder alarm went off while I was in there so I decided to go ahead and take the picture, HAHA! toms shoes - Simply Vera Wang leggings, grey this day, I like to spice things up - Vanity tank top, my most recent discovery, they have SUPER long tanks - KIRRA sweatshirt 

FRIDAY / UGG boots - ol'faithful vera wang black leggings - DIVIDED top

Since it's an IKEA weekend we don't get to go to church- SUNDAY / UGG boots - leggings - white tank - PINK sweatshirt

MONDAY again... / leggings, see I am starting to get embarrassed-promise they are clean ;), vanity long sleeved white tee, H&M sweater, can't forget those beautiful L.L. Bean slippers ;) and the child that was attached to my hip that morning...

Tuesday, February 25, 2014

Healthy snacking...

Don't you hate when you want to "pin" something and the link goes NO WHERE! Grrr....I pinned this amazing looking salad the other day. I was making my grocery list when I went to get the list of ingredients and NOTHING. With the click of a button I was stopped with nothing but a picture of the food. ;( It looked pretty easy, I just didn't know the quantities of the items. I took a guess and decided to give it a try...

The picture doesn't do it justice. It's red pepper, chia seeds, cucumber, cottage cheese, and avocado. It really is sooo good! It was AMAZING with a little salt and pepper added as well. Below are the directions I "created." Ha!

2 Red bell peppers
2 large cucumbers
2 avocados
1 24 oz. container of cottage cheese
1/8 of a cup Chia seeds
salt and pepper to taste

I sliced the pepper and cut slices of the cucumber into fourths then added the avocado and cottage cheese. Last I slowly sprinkled in the chia seeds as I stirred the mixture. I refrigerated it for 2 hours before was a super easy and really tasty healthy snack! Hope you enjoy.

*Also I am guest posting over at Confessions of a Northern Belle...head over and check it out!! 

Monday, February 24, 2014

Succulent Planting

I have always loved having a few plants around the house. Though I will admit...I am TERRIBLE at keeping them alive. ;( I am so far from having a green thumb it's not even funny. I have been "pinning" succulents for a while now and really wanted to give them a try.  Last month during our IKEA trip I grabbed a few that I thought were cute. Ha! They are $2.99 at IKEA so I thought this would be a perfect time to try. I brought them home and they sat in their little separate pots on the kitchen table for a month. I just couldn't decide what I wanted to plant them in...FINALLY as I was organizing the basement I found this fun jar in my party box. It was perfect...I knew I wanted to plant them in something I could use, and would look nice as a center piece for our table.

It was super easy! I grabbed Kelley's left over potting soil since I looked all over for it at Target. I gathered a few rocks from outside and planted away. ;) It took about 10 mins and I love the way it turned out. keep them alive, we shall see. All I know is I love the way it looks today!

Sunday, February 23, 2014

Roots or Fruit...

I enjoy reading other blogs. It's usually how I "unwind." I follow many women who encourage me in my daily walk with the Lord, with my struggles with motherhood, or even just to read about someone's day who is so helps. I know I have mentioned Jen @ Lots of Scotts before but she is always so great! Jen is such a encouraging woman of God.

Jen recently published a post titled "Roots or Fruit?" It really hit home for most of her posts do. Please take a second to read the post HERE.

I will leave you with this nice little quote from the post..."As we all know outward appearances aren't everything. While personas can be appealing, they aren't what will keep our kids grounded in the inevitable storms of life."

This is so I feel Wyatt, more than Sis, is at such a critical time of learning and growing in his life. I know it will last for a while but we are entering the "actions speak louder than words stage." I want my children to see me, as their mother, as a GROUNDED woman of God. Someone who fears the Lord with all my heart. A woman who thinks of others before herself, someone who the know loves them with all their heart but knows the IMPORTANCE of not always thinking of what makes me comfortable but what the Lord wants me to do...I want them to know..."outward appearances aren't everything," and believe it with all of their heart!

I know I am that mother that is concerned about the actions of my children in public that sometimes I am overlooking the roots and trying to just look like they already "bear" the fruit. I pray, just like Jen, I focus begin to focus more on the roots and trust the Lord for the fruit.

Saturday, February 22, 2014

All you "college-goers" out there...

We all know a HUGE expense while in college is I right?!?!? I can't believe I didn't know about this awesome place while I was in school. It would have been my #1 place to rent books....

Campus Book Rentals is amazing! To top if off with every textbook that is rented from them a the donate to Operation Smile, which is an awesome program in itself. My FIL is a dentist so charities like this are so dear to my heart!

Campus Book Rentals is offering an awesome new program called: Rent Back
If you are in school and renting textbooks Campus Book Rentals is the way to go! Who doesn't want to earn a little extra cash while in school!?!?Don't wait any longer...check out Campus Book Rentals TODAY!

Friday, February 21, 2014

The Pseudo Christian

I am really loving the sermon series right now at our church. If you  haven't been reading my blog for a while I want to mention Sean Craig, from the band Phillips, Craig, and Dean is our pastor. We love it and feel so at home! I don't know why lately but I have really enjoyed taking notes and posting them on the blog for others to read. Who knows...maybe someone else need the "stuff" as much as I do?!?!? ;)

Last Sunday was titled "Pseudo Christian." There was a lot of words about how there are so many Christian who have learned to "fake it." We all have a past. There are some things each of us want to erase. Be honest with yourself, don't bury it and continue the "fakeness," it's not what the Lord wants.

God wants us to be honest with him. He wants us to be honest about everything, even our failures. If we are honest with God then we will be able to create an authentic relationship with him. The truth is though...if you aren't honest the true fellowship, the TRUE relationship can not and will not be created.

Like mentioned about we all have a past. We have to expose it, bring it to him. Once we have exposed it to the light God can erase it. We, as Christians see what we need to do, we know/believe what we need to do but ACTUALLY walking it is a struggle...

*I will note: this is so true to me and so fresh in my current spot in life. I know and I believe what the Lord is telling me but I am struggling with what to do next. I know he is with me by my side through every trial and EVERY triumph and I am so happy when my FIRST thing I do is PRAISE the Lord for what he has done...I can't help but smile when our 3 yr. boy turns to me and says "I am so happy God did that..." it's in his little mind that I love how the Lord speaks to me...*

We get upset when we can't be in control. We get upset and something  "small." Ask yourself...not why are you upset but why does this particular thing make me so upset? What's the root of this? As we get not sin!

We are to 1. confess 2. stay committed...and so important is to be honest with others. We are to be true and real...authentic with everyone.The references were:
1 John 1:5-6
1 John  1: 8
1 John 1: 9

Again, I pray you will take something from this small little recap of the message. Happy Friday and have a great weekend!!

Thursday, February 20, 2014

If you really knew me...

 The girl in the red shoes completed a post titled "If you really knew me..." She ended with the question "So....what would I really know about you if we were friends?" I thought that would make a fun blog post...

If you really knew me, you would know...

- I am definitely a morning person. As soon as dinner is cleaned up, kids are in bed, I can't lay down on the couch without Mark saying "goodnight." Ha! 

-  I prefer Diet Coke over coffee any day. If my kitchen window could be a McDonald drive thru I may never leave my house. 

- My husband and I own a small business. This helps financially since I no longer am a school teacher.

- I grew up in a small town and if you would have asked me if I would ever leave...the answer would have been "NO," then I met Mark...

- I carried twins full term and then had another pregnancy 13 months later...needless to say I have a lot of insecurities when it comes to my body.

- I aspire to be this lover of running...I have been trying to get out and run more on 2014 and it's just not happening. Maybe someday I will learn to love it, until then I will hate it. Ha! 

- Target is by far my favorite store to shop. It *might* not be an exaggeration that I go every day. (until recently when I am REALLY cutting back) 

- I really dislike water, I don't know how or why but I do. It's really a struggle to drink it and I can go days without having a full glass. Bad, really bad, I know. ;( 

- I might not go to work everyday but I still have a uniform. Leggings, boots, and a big sweatshirt. ;) 

So....what would I really know about you if we were friends?

Wednesday, February 19, 2014

I wear my sunglasses at night...

So...this post is so I never forget this day. It was a few weeks back and a random Friday. Sis woke up and found a pair of her little sunglasses. She put them on that morning and never looked back. This is a TRUE STORY FOLKS...
We ran errands all morning. She didn't take them off once. We went to lunch and tried to get her to set them on the table during lunch,  that wasn't happening.

 We took the kids to see The Lego Movie and she refused to even take them off while IN THE theatre. It was hilarious! I could just feel "the people" looking at her and watching the little girl with the pink sun glasses on ALL. DAY. LONG.

The plan was to accidentally get the glasses off when we put on her pajamas. Ya, that didn't happen either. This was her before bed, sitting in her glider waiting for Mark to come rock her. Yes, Mark rocked her to sleep that night with her glasses on. Memories-memories-memories.

The next morning she walked by the glasses as if they were "so yesterday" and hasn't put them on since. The glasses will be put into her keepsake box...probably more for Mark and I to be able to tell her the story of the day she was 1 and wore sunglasses all day but either still makes me smile.

Tuesday, February 18, 2014

Disney Live

A few weeks ago we went as a family to Disney Live. It was a BLAST!! It was with Jake and Sophia...the kids 2 current favorite characters right now. The show was the perfect amount of time. Our seats were pretty good but far enough away where we didn't feel a lot of pressure to make the kids sit still and not move.
 Wyatt wore a Jake doubloon he got when he was dresses up as Jake at Disney so Sis thought she HAD TO WEAR her crown. Thankfully after getting settled she let us take it off. It was a little much. HA!
We had a great time and we were so happy the kids loved it. It was a little different than the "Disney on Ice" we have been to in the past but it was a nice little change! 

Monday, February 17, 2014

Cousin Fun

A few weekends ago we got to watch our nephew at our house. They had a blast! Wyatt adores him and enjoys the time they get to spend together a lot! We picked out 2 new Lego Movie lego sets for them to put together. We had snacks, built Legos, and watched a fun movie! It was a fun cousin evening! 


Sunday, February 16, 2014

Tap, tap, tap....

This little girl is so much fun! We recently enrolled her in a little dance class. They practice tap, ballet, and a little tumbling in a 55 min. class. She LOVES it so much. Sis has always been a "dancer" but she also has an older cousin who is an awesome dancer. Sloane LOVES her so much. It's really sweet to see how much she already looks up to Ariel and she is not even 2 yet.

She has only been to a few classes but she loves to "tap, tap, tap," all the time at home. She also comes home singing the little songs they dance to as well.

I was never a dancer or anything "girly" for that matter so this is all really new to me. Since she is so little we are just letting her lead the way with it. As of right now this is something she has that's for her and she is really enjoying. Wyatt went with us last week and got to see her a little bit. He was so sweet and even giggled a little as he watched through the window. ;)

As crazy as it sounds...they do have a reciatal sometime in the summer...but as it get closer we will have to see how she is doing. ;) Until then we will just continue to "tap, tap, tap."

Saturday, February 15, 2014

Our fun Valentine's Day...

I know I say it a lot but I do love being able to go back and read about past Valentine Day's and even seeing pictures too! Yesterday was a great family day! This is the first year Wyatt has even mentioned or really gotten into Valentine's Day so we "went with it" and made the day special. You can read about past Valentine's Day celebrations here: 2010 2011 2012#1 2012#2 2013#1 2013#2 2013#3 and read on for yesterday's fun day...

The kids woke pretty early so we just had breakfast at home. Mark and I thought about taking the kids to Krispie Kreme but it just didn't work out. Mark made eggs and english muffins instead. ;) After breakfast we all got ready and headed out to run a few errands. We made a quick stop for cake pops and coffee along the way.

I snapped a quick photo of Sis before loading the car because she thinks this is just part of her daily routine. (I can't say that I mind) I didn't get one of Buddy as he doesn't ever feel the need to stop and stand still plus we all know how he feels about smiling. Ha!

We had lunch at Chick--fil-a and LOVED it. The kids love eating there so it makes it easier to get them a meal when I know it's going to be eaten. ;) (We had a free kids meal and a free cookie coupon so that was a WIN for us!)

After errands and lunch we came back home for a little rest time. Ya, I didn't say naps because the only person that had a little siesta was Mark. LOL! Sloane had taken a cat nap in the car so she wasn't having a real nap at home and well, Wyatt doesn't nap so...what else is there to do but get out the glitter. I am pretty sure I had lost my mind. I think we crafted every day this week so I had to get creative. They loved the glitter and it wasn't actually too bad.
(grandparent V-day gifts)

The kids continued to play together. They have been so sweet to each other this week...for the most part. We haven't been watching t.v. during the day and I don't think they have missed it a bit. It's been so awesome to watch the games and toys they have been playing.

The weather was a bit crazy as the day progressed so late afternoon I ran to the grocery and grabbed a few items and stuff for dinner. We enjoyed a candlelit dinner together as a family. ;) Mark and I gave the kids a few fun little gifts and we enjoyed chocolate fondue together for dessert.

The kids went to bed at normal 7:30-8pm and Mark and I were able to enjoy a wonderful evening on the couch. What a great Valentine's Day 2014 we had!! 

Friday, February 14, 2014

Valentine's Day 2013

We have been so busy lately but its' been mostly a "fun" busy. ;) The kids have had parties at school, dance class, play dates, and some fun Valentine's crafts too! I am loving the age of the kids right now, for the most part, they are loving each other too! ;)
 We had our monthly play group date on was a Valentine party. It was super cute to exchange Valentine's with all our little friends. It's always MAJOR chaos but SO MUCH FUN!!!

 Seriously, who is this kid? There is no "little" boy left in this picture. He looks so grown up. This picture was taken at his preschool Valentine party. ;)
 Then there is this little peach. She is officially less than a month away from turning TWO....TWO YEARS OLD PEOPLE!!!
I love comparing is Valentine's 2011, 2012, 2013, and now 2014.
Sis had a Valentine party in dance you can tell she was SUPER excited about it! (picture was taken on my phone, as you can tell) 

For remembrance sake...I let the kids pick out the boxed Valentine's to give to their play group friends (I went all out for Wyatt's class and decided to give the kids a little "freedom" for play group. Ha!) Sis had a tough time deciding between Sofia and Ariel but she finally chose Sofia. As you can see she loved coloring them but was pretty concerned about the flakes of paper that landed on the table as we tore them apart. She wanted to "hipe" (wipe) then she was about getting her Valentine’s finished. 

 When Valentine's Day was over I had made a total of 14 dozen Valentine themed cookies. It was super fun and I am enjoying this new little adventure. I can't wait to start making Spring ones and even Easter....though I do have a few fun St. Patty's day ideas. ;)

Then there was this kid...who had to follow the EXACT directions on the box. The sticker, the eraser, and even the envelope had to be like the picture. Ya, that would be his father....;) He didn't have a hard time picking his boxed Valentine at all....Ninja Turtles, hands down.

* I can't believe Feb. is 1/2way over and I have been party preping for Sis's b-day party/ies. We are staying busy around here...but in a good way. We are so ready for some warmer weather though. It's been in the mid-20's and the average temp. this time of year is in the 40's so we are itching to get outside and see a little sunshine!

*Happy Valentine's Day and Happy Friday to you all!
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