Friday, June 29, 2012

photo friday!

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What a beautiful Bug!

Thursday, June 28, 2012

Shoe-less Wonder!

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If you have ever met Rory you will quickly learn that there is something amazingly special about her.  It's not just the fact that she had a 6 cm left shoe lift and has Congenital Femoral Deficiency, that actually has nothing to do with how unbelievable she is. It's the fact that this little girl is so astounding is because she has defied all of the odds and restraints many of the doctors  have put on her!
Running Wild!

When we first found out about her leg, we learned we would have to amputate, which we obviously did not do!   We were told that she may talk a lot longer for her to walk because of the discrepancy but she was walking perfectly at 11 months.  She now walks with and without her special shoes. However, lately she prefers walking without shoes.

 It is not that her shoes are hard to walk in or that she hates wearing them, it is just that it is becoming so intensely hot outside that her cute little socked feet begin to sweat and become so wet and uncomfortable.  She wants nothing to do with them, and will take off her shoes anywhere!   On our recent trip she took them off at a restaurant, at the wedding reception, and last night she took them off when we were feeding the ducks. 

It's extremely difficult to tell a toddler anything, let alone that she needs to wear her shoes.  And honestly, I really don't know what we are going to do for the rest of the summer!  But right now, Rory walks great without her shoes, she finds ways to get around.  Although I think most everything she does is incredible, the way she gets around without her shoes is truly remarkable.  She's such a special girl, she has really defied all odds and I couldn’t be prouder!

Wednesday, June 27, 2012

traveling with Rory....

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Traveling with a toddler is extremely difficult.  Traveling with Rory is near impossible!  Jon I just got back from taking a trip to the Midwest for a wedding.  To keep it nicely, we will never travel again... except (obviously) to Florida.  Although Rory is not bad on the plane, she's quite the jet-setter since she has been to Florida twice, St. Louis a few times, and she just got back from our most recent trip to the midwest.  Although I felt like I should have bought everyone a complimentary alcoholic beverage fro being on the same flight as us, it's not the flight that is so extremely difficult.  
It is the time change, it's not being able to eat her normal foods, it's not being able to be in her own bed and sleeping in between mommy and daddy in a hotel, its adjusted nap times, time changes, she didn't have her highchair or potty chair, or any of her normal toys around.  Another thing Rory was not used to you was all of the traffic and driving in the car.  At our house, we are very blessed to have everything we could every need within a five minute car ride. On our trip everything was so much further, sometimes taking us almost an hour to get from one destination to another.  
To make things better, the airline lost her luggage on our way back home.  Our flight was delayed and we didn't get back home till around 1 o'clock.  At that time Rory was so stressed from the trip she threw up all over.  There was vomiting all over her room, all over me, and all over in the bathroom, and in the bathtub.  Vomit was everywhere.  It was the hardest trip ever!  When I do have more time (since I have to try to get cleaned up from our trip and unpacked) I will blog about everything, but right now: all I am going to say is traveling with a toddler is extremely difficult!

Tuesday, June 26, 2012


Pin It Sorry I didn't have time to blog today. We just got back from vacation and it's time for doctor appointments! Check back tomorrow!

Monday, June 25, 2012

Modifying Playgrounds for Rory!

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One thing I never want to take away from Rory is being a wild and crazy toddler.  I want her to be adventurous: run around, get dirty, be crazy, and have fun like most other toddlers her age.  The only problem is the 6 centimeter lift on her shoe sometimes makes things difficult for her (and for me).  
Although Rory does not let the shoe hold her back, it causes me reticence.  The shoe is so tall that it often causes falls, bruises, scrapes, bumps, and other catastrophes.  I find my stomach sinking in my belly every time I see her take off in a sprint or jump around the house.  The realization has set in that I can't keep her in my own little bubble for the rest of my life.  Rather than accept the bumps and bruises I have found myself modifying every day activities so that she can still enjoy herself, but just a bit safer.  

Playgrounds are a big part of our weekly, if not daily, routine.  Rory loves them and there is no keeping her from climbing up and down and jumping all around the equipment.  When she was younger we would just hold hands the whole time on the playground, I would do everything she did, but now that she is getting older she wants to be independent and do things on her own.  I have to find ways that allow her to feel independent but also still protect her from injury.
Playground Obstacle #1- 
Many of the new playgrounds have wonderful astroturf that is almost bouncy when you walk on it- which is really great to have when you have a sprinting toddler!   Most of the older parks have wood chips, sand or sticks which is really hard for her to walk in.  Whenever we encounter rough playground terrains I make sure that I walk everywhere with Rory so that if she does fall, I am right there to catch her.  
With Rory’s new “independent” stage, somedays she doesn’t want to hold hands and walk.  To avoid the upcoming fall, I will pretend to “walk” race her or “baby step” race her.  This way she isn’t running, she feels like she is still independent, and mommy is still within reach to catch her falling beauty and avoid injury.
Playground Obstacle #2
When she first attempted going down a slide, we quickly learned that her shoe created an issue.  The shoe often will catch on the slide and she will fall forward hitting her head on the slide.  Because of this, we have taught her to go down the slide on her tummy, just a little modification, but helps minimize injury.
Minimize injury is the key phrase.  
Now that Rory is older, she notices older children going down slides in the sitting position, and in turn, wants to do so herself.  She attempted this the other day and fell, hard.  Although I am always waiting for her at the bottom of the slide, this was a big slide, and it left a big welt on her head.  So now we opt for playgrounds with small slides to mitigate seated side slip-ups.  Many playgrounds we go to have two slides together so that Rory and I can go down the slides at the same time, that way if she falls I am right next to her to get her!  

Playground Obstacle #3
Climbing is another issue we have.  Many of the playgrounds have little square holes cut out that kids can climb up to get to the big playground equipment.  These don't seem to work well with the shoes- Rory’s shoes are just too big to fit in them.  Rory is so determined to go up the obstacles she will do it with our without her shoe.  When she does attempt to go up these, I stay behind and cheer for her.  Little does she know my hands are right underneath that little body and often times my hand will act as a hole for her foot to push off of.  
In a nut shell, playgrounds are hard for us, but Rory loves them.  For all you special needs mothers out there, try to find ways to give your child “independence” while still maintaining peace of mind

Friday, June 22, 2012

Photo Friday

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Saying, "Love you!"

Thursday, June 21, 2012

Fourth of July Flags!

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I can almost smell the Fourth of July fireworks!  I have never made any Fourth of July crafts before- so today was a first for me.  Rory told me that she wanted to “paint hands and feet” today; so I couldn’t let her down.  I knew I wanted to do something “Red, White, and Blue,” but that was about the extent of it.   We grabbed our supplies and took off for the back yard.  Luckily, my husband has an American Flag hanging in our garage and it caught my eye on the way out.  
What could be better than Hands and Feet Flags!   Please keep in mind...This is a 21 month old interpretation of the American Flag.  I meant it to be a learning and fun activity, not a “realistic” flag.   
Flag Fun!

For this activity all you need is paint and paper; and its so easy and fun!  We used Red and blue paint (obviously); however we did not use any white paint for the stars or stripes, rather we went to store and bought pretty star stickers and used white paper.  But, if you use a piece of colored paper you may need white paint for the stripes.   
Firmly believing that almost everything is a learning opportunity, we heavily reinforced colors!  
We started with the stripes of the flag by painting her feet red.  I let her walk across the paper long ways making the beautiful red stripes.  (This was by far my favorite part, mainly because when Rory walks without her shoes she walks on the very tip top part of her toes.  It was really neat for me to see the whole left foot and the blue toes of the right foot!).   I made sure (As best as I could) when Rory was walking on the paper, that she left spaces between the red stripes for the white stripes.  Also, keep a nice square segment in the top left of the flag for the blue part and the stars. I kept reapplying more paint and having her walk on the paper, since there were gaps in her footprints.  
After a hand washing, and several splashes in our water, we were ready for the blue part of the American Flag.  For this, we painted her precious paws blue and just let her “hand blot” the top left square until it was filled with blue paint.  We were going to try and do “finger print” stars by applying white paint to her finger tips and pressing her fingertips down on the blue part of the flag, but it began raining so we cleaned up and went inside!
After the paint dried, we put some silver stars on the blue portion of the flag.  Although we bought 50 stars, Rory only wanted to put a few on the flag.  We counted each star we put on, which I think was why she lost interest since she can only count to 10!
Happy Fourth of July!  Now Daddy has a new flag to display in his office!  

Wednesday, June 20, 2012

Shark Shoes!

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The first time the other day I bought Rory a brand-new pair shoes at the store!  She also got to wear them and we never had to put on a lift!  We got Rory a pair of flip-flops at Target because outside we have  Rory’s water table and her “Water-wonderland.”  We decided that she needed a pair of shoes for her to walk out to her “waterpark.”  We didn't want her current shoes to get too wet, and she loves being in bare feet, so we thought the flip-flops would be a good idea.  Also in the summer her feet get so hot in the shoes Rory picked them out herself because they have sharks on them, and since Rory loves all animals she immediately saw the shark shoes put them on!  Now she loves to put on her shark  shoes!
Shark Shoes!
It's hard to see her walk in her shark shoes especially the little right shoe. She's is on her toes so much and her little toes slide out of the tops of teh shoe.  it's hard for her to walk in them, but she does it!   The other day when we had our water park she was falling on the way back into the house.  It is tough because the outside ground is unstable and harder for her to walk.   She loves her shark shoes so much, which makes me happy. 
It was so nice to go into a store and buy shoes without having to look at the materials the shoes were made of, whether the glue will fit, if the shoes were thick enough, etc... I didn’t have to think about any of that, I mainly just made sure the shoes were  easy to slip on and off Rory’s feet and that she liked them.   
She loves the shark shoes!

Tuesday, June 19, 2012

Happy Father's day to Papa!

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Yesterday I wrote about how my husband, Jon, was such an amazing father.   Today I would like to continue on the “fathering topic,” and talk about my dad.  My dad is is a role model for any man, he's wonderful, caring, and will bend over backwards to help anyone at any time of the day.  There are several things I really love about my dad; however the thing I love the most is how he is with Rory.  He is always calling and asking to Skype with Rory.  
When we do Skype with “Papa” it is not what many would think.  My dad doesn’t just sit and talk to me, he is completely focused on Rory.  The two of them will either make silly faces together, sing songs with her, or play peek a boo; and I think for all of those reasons  (and for many more) she is a “Papa’s” girl.
It is pretty funny how my toddler already knows what the ipad and Skype is!  She frequently asks for the ipad to Skype her Papa.  The other night when we got done skyping, she was so upset and started crying for more “Papa.”  It is really neat for me to  see how close the two of them are.  I love how Rory asks to call him and Skype him.  Although I do wish that we could be closer so she could spend more time with my dad, until that time comes we are happy to be able to Skype.   We are so lucky to have such a great Papa and can’t wait to see him again!

Monday, June 18, 2012

Happy Father's Day

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I hope everyone had a wonderful Father's Day!  I think that Mother's Day and Father's Day is always such a great time to thank and appreciate how extremely difficult it is being a GOOD parent.  (I stress the good, because it is easy to just be a “parent”).   I never, in a million years, thought being a good parent was as difficult as it is.   Today I want to share a little bit about our special Daddy! 
I am going to write today about the best father anyone could ask for, my husband Jon.   Jon is the best father to Aurora.  Although I always knew he would be an amazing father, he has completely exceeded all of my expectations.  I felt so upset because yesterday we didn't have a lot of time to celebrate Father's Day.   Rory was insanely crazy, we were backed up on our house duties because of our busy week both jon had at work and I had here with Rory.  
Rory and I woke up making him “Jelly doughnut muffins” and then gave him his father’s day presents.  We gave him the tie we made and showed him The matching dresses that I made for Rory and I to match.  We also made him some coasters and I barbecued for him on our weekly “grill night.”  I really wanted Jon to have a great Father's Day.  I wanted to plan a whole weekend just to let him know how much we appreciate him and how much we love him, even though I know he knows.... it is always nice to have a little remind.
 Jon has always been there for me and Rory.  It is one of the many reasons why I love him so much.  He always puts us first before anything else in his life.  Jon I have been married for almost 7 years to be seven years (next month will be our anniversary) and although we do have our ups and downs we could not be more compatible together.  Part of what makes our marriage work so much is our communication.  I could not be more happy as a wife and mother and part of that is because I have such a great husband who is there for us no matter what.   I always knew that Jon would be a great father, but I didn't know just how good!  Once Rory was born Jon just turned into super dad!  He is amazing!  I am so lucky to have him!  
Rory loves him so much!   It is so funny because when Jon is home, all Rory wants to do is spend time with her daddy!  Even when Jon is outside cutting grass Rory and I are by the window watching him waving every time he passes us!  She always wants to do what her daddy is doing...And who could blame her! I love watching the two of them play together- nothing makes me smile more than watching the two of them play!
I hope everyone had a great Father's Day.  I am very happy and lucky that Rory has the best daddy!  Jon, happy Father's Day and I love you!

Thursday, June 14, 2012

Father's day cards!

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With Father’s day just around the corner we knew we had to make some crafts for our wonderful Daddy!  Rory’s dad, Jon, is wonderful and I hope he knows how much he means to us.  Today we made a special card for our daddy, using (of course) Rory’s beautiful hands!
For this project all you need is paper, crayons and glue- It is SO easy!

We first colored all over, on a large piece of paper.  We cut the paper a few inches tall, around 3 inches to be exact, and as long as Rory’s arm length.   We wrote on it “I love you this much,” but you can write anything you want on it!
Next, on a new piece of paper, we traced over Rory’s hands and cut them out.  We then colored Rory’s fingernails, discussing colors (currently Rory just likes red and blue, but with continued positive reinforcement, I know she will get it!).   I had to cut out extra hands because Rory liked to give them high-fives.

We then glued the right end of the arm length paper to her cut out right hand.  Then we glued the hand to the middle of right side of the card.  I folded the arm length paper accordion style and glued the left hand to the left side of the “i love you this much” paper.  

Now when you open up the card there is a nice arm length hug for daddy!

Wednesday, June 13, 2012

Father's Day Ties!

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It is almost Father’s day!
Because Rory has the best Daddy we are trying to make some great gifts for him Father’s day so he truly knows how much he means to us.   Daddy loves all of Rory’s art work, it is hung up all over his office; but for father’s day I wanted to make something different!  I thought we could make him something he could wear to work.   We decided to make Daddy a nice fancy tie!
Materials needed:
  • Tie
  • fabric crayons
  • paper to color on
  • iron
*It does require an iron, but I made sure to use the iron when she was napping.
This activity really affordable and easy.   We bought a nice white tie and some Fabric crayons and started to color!
I have always wanted to use Fabric crayons, just to see if they worked and how well they worked.  I had Rory color on a big piece of white paper, we went through each color and she had a great time scribbling.  I made sure she pressed hard with the colors, so when I needed to iron the drawing on the tie the colors would be bright and vibrant!

I cut the paper up into strips so that the whole tie would be covered.  When Rory went down for a nap; I put the paper, colored side down, on the tie.  I held the iron down on the coloring for a few minutes at a time.

The crayons worked great!  When I removed the paper there was beautiful scribbles all over the tie!  The color was so bright and I know Daddy will love it!

Then your done!
A beautiful, one and only, Rory designed tie!
I can’t wait for Father’s day!

Tuesday, June 12, 2012

Restaurant Success!

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This weekend Jon, Rory, and I did something we never do: we went out to eat at a restaurant!   Going out to eat has become a bit more difficult since we have a toddler.  It has always been a little bit challenging with us being vegetarians.  Although many restaurants are now becoming more “vegetarian” friendly, we don’t know if their “vegetarian” is our “vegetarian;” in that we don’t eat lard, fish or fish products, or other animal byproducts.  I am also very pick about what goes into Rory’s belly, I have made all of her food since she started eating solids.  Although, I have gotten rather lenient (she does eat ice-cream sometimes and loves freezer pops) I still like knowing what is in food that goes into my daughters stomach. It is just easier (and more fun since Jon and I like to cook) to eat in the house.
We have only been out to a restaurant with Rory once a few months ago.  We went with some of our friends, who also had two girls, to a “kid friendly” restaurant.  It was kind of a disaster because the girls were all over the place, Rory didn’t want to eat any of the food (mainly because it was too hot), and Rory was out of her chair running around after teh appetizers were served.  Jon and I need that we would never bring Rory out again.
Sunday, we went to the beach in the morning and then afterword decided to drive to Pocahontas Pancakes, one of our favorite places to go before Rory was born.  Breakfast is good for vegetarians too because they have many meatless options!  It was a little crowded, as it always is, there was a 15 minute wait.  Being by the boardwalk we decided to wait outside and see and people watch until our table was ready. 

This time out was so much different!  Rory started getting really excited about eating pancakes! Not only did she stay in her chair the whole time but she ate the pancakes, she ate a whole pancake!  She loved watching everyone, especially looking at their shoes.  She also really enjoyed drinking out of a straw and waving to everyone. It was a very successful outing, a perfect ending to our weekly beach day!

Monday, June 11, 2012

Water Wonderland!

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Many of you may know that Jon and I are huge bargain shoppers.  We love consignment stores, flea markets and yard sale fans.  A lot of the times we just like looking and not buying anything, sometimes it is fun to look at things other people want to get rid of!   But it is always fun to stumble upon something that we actually need that is in good condition.   I am a firm believe that everything can be cleaned and sanitized with bleach.  
The previous weekend during our coffee and morning yard sale trip we happened to find some treasures.  We were just driving around and stopped because we saw bright-colored toys and we knew they had to have kid gear!  Rory has a tendency to be a quite rough with her toys, so we frequently don't spend a lot of money on new things for her to break!  At the yard sale we found this inflatable  water playground for kids.  I thought it looked pretty fun but they wanted $10 for it.  We also saw a little tykes slide that was in good condition and we knew Rory liked it because she started playing on it while we were at the yard sale!  We ended up buying both of the items for about $4.00.  
This weekend we decided to turn the backyard into a water wonderland!   We opened up the inflatable water park and soon realized and never been used before; everything was still in the in the original packaging!  Well worth the $2.00!   We attach the hose the outside, blew up a few whales, sharks, palm trees, and water rings.  It turned out to be such a neat toy and we had so much fun splashing around and watching Rory go down the whale slide!   
We also brought out the other $2.00 bargain slide that we got at the yard sale and we put it our small baby pool.  A few weeks ago we also purchased a new water table and placed that in the backyard as well.  All three  together, all three of these toys; the slide in the pool, the water table, and the inflatable water park, created this weekend’s backyard water-park.
Nothing is more fun than playing in water with Rory!  

Saturday, June 9, 2012

Photo Friday!

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Thursday, June 7, 2012

Big Girl Room!

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Rory now has a big girl room- and believe it or not...she sleeps through the night!  We took her crib down and rather than get a toddler bed, we just put her mattress on the floor and slowly but surely we will work our way up to a big kid twin bed!   Her mattress is in the corner of the room, so two sides of the mattress are “blocked off” and she can’t fall on the floor.  On the other sides of the bed we have my body pillow and her fish pillow (from her cousin James) to brace her fall.  Although it isn’t a big fall from the mattress to the floor I wanted to be prepared just in case...However, she mostly stays on the mattress!  She hardly rolls at all!
She loves  her big kid room!!!   I am surprised how much she likes it!  She goes in there by herself, with her babies (Marilyn, Kindof, and her pigeon), we read books, and she goes to bed....for the whole night!   I really can’t believe how big she is getting!  
I feel so spoiled...I am sleeping a full, uninterrupted 8 hours!

Wednesday, June 6, 2012

Things Special Needs Mothers, don't like to hear...

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This weekend was really difficult for us.  Jon, Rory and I went to a local K9 Festival and had a great time seeing all the dogs.  There was only one problem; Rory’s shoes were quite a distraction for many people.  She was in her bike/stroller so if people saw her from one side, they would only see her one big shoe.

We had so many people come up to us talking about her shoe; the usual comments: how they have never seen platform shoes for babies, if she has trouble walking in her platforms, where they can find heels for their babies, and of course how cute it is.  Jon is better about shaking things off than I am, but after a while these comments start to get to me.
K9 Festival!

Which brings me to today’s post.  There are a few things that people have said to me that have made me feel nothing less than awful.  I just want other people to know

 “What did you do to cause this?” 
I know that as a mother of a child with special needs, I have guilt about Rory’s leg.  I know that there was nothing I could have done differently during my pregnancy that would change Rory’s getting Congenital Femoral Deficiency, but I still have the motherly feelings of guilt that there was something I could have done; because she was in my womb.  The last thing a mother wants to here is that they did something to harm their baby- trust me, they have enough guilt, even if they had no control over what happened.

I remember the first time an older woman said this to me (at a church no less).  It killed me, I came home and cried for hours.  I wasn’t sure if she expected me to say that I smoked during my pregnancy or what (I did pregnancy by the book) but I do know how much it hurt.

All I know is that if I could have done something to prevent Rory from getting this, I would.  I would cut off my my leg and give it to her, I would do anything I could to help that little leg grow to be the same size as the other leg; so for someone to ask me what I did to cause this...It just hurts.

 “It’s so cute!” (whatever the disability is)
I know Rory is adorable, and that everything about her is adorable; but sometimes it is really hard when people tell me how cute her shoe is.  Having people tell me about how cute it is makes me feel like people think it is a “privilege” to have a special shoe.  That her shoe is some fancy accessory, other people want to have.  I wish that Rory would never have to wear her shoe lift again, that we could go to any shoe store and pick out any kind of shoes there and Rory could even wear them home.
Anything on Rory looks cute!  It is Rory that is cute, no the shoe!

I know people want to just try and make me feel good, but hearing about how cute it is is difficult to hear.

The last thing, isn’t saying anything- it’s an action: a stare.  
I  am pretty sure any mother of a special needs child would much rather have someone ask a question about their child's condition than have someone stare.  Sadly, many of the stares come from adults, other kids seem to always ask.

When we were leaving Florida from one of our visits to Dr. Paley, there was a husband and wife couple across from us in the airport.  The wife couldn’t take her eyes off Rory’s shoe.  After a few minutes, she nudged her husband and whispered, “look at that baby’s big shoe.”  Just what every mother wants, people looking at your child like she belongs in teh circus.  I was a few feet away from her and would have much rather her ask me about the shoe.

I always welcome questions about Rory’s condition because I want to make people more aware of her Congenital Femoral Deficiency.  I think other mothers of special needs kids would much rather answer a question than have their child being stared at.  No one wants their “imperfections” pointed out (I am not sure if “imperfection” is the right word, since Rory is completely perfect in my eyes...but for now it will have to do).

Just remember: Mothers are extremely sensitive with their children.  Before you say anything to a mother with a special needs child, just think about if you would want someone to say that about your child (or loved one).   It is hard to be a mom....especially when your child has special needs.

Tuesday, June 5, 2012

Silly Roro's

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Rory's favorite pictures!!

 Rory loves Shannon: she loves skyping her, drawing pictures of her, looking at pictures of her, and talking to her on the phone.  There are a few pictures of Shannon, Miah and Trish where they are making funny faces.  Rory sees it when she goes through my phone and has recently taken an interest in the pictures.  She just stares at it, almost confused; so I explained to her that they are making “silly faces” and proceed to show her “mommy’s silly faces,” and I will ask her to show me “Roro’s silly face.” 

We love to get the mirrors out and make silly faces at each other.  Her new thing is going around the house saying, “Silly Roro’s,” and “Silly Mama” and the goofy faces begin.  

It could be the cutest thing in the world!  I just love hearing her say "silly Roro's!"

Yesterday we had such a fun time outside, we went out to the park, went on a “hike,” kicked the ball around, and of course: made silly faces!

Monday, June 4, 2012

Photo Friday!!!

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Last year's Christmas present- her pony!  She could hardly ride it either- we had to hold her up!

This year- shes a hands!

Potty Chair!!!

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Rory always amazes me.  Everyday she does something new that completely blows me out of the water!  Today, was no isn’t even noon and yours truely has used the potty chair twice!  Yesterday she used her potty chair 3 times!  Of course; we now have a whole new toilet paper budget, but it it is no doubt cheaper than diapers!  
Rory loves to take pictures with my phone!

I know everyone has their ways of potty training and different methods work for different kids.  Currently, Rory loves to use her potty chair for: 

  • using toilet paper
  • Mommy singing and doing a happy dance
  • She often will ask to call Dada, Mimi, or Papa after she goes potty- and so loves to use the phone

So Big!
I can’t believe that Rory is getting so big!  The other night we were looking at pictures and videos last year of her and I am completely shocked at what one year can do!   I bought pull ups yesterday because I know that is our next step.  She is just growing up so fast! 

Saturday, June 2, 2012

Photo Friday!

Pin It Someone went potty on the potty chair so she got to call Mimi and see snakes!

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