Thursday, May 31, 2012

Let's Dance

Some how Kylie had gotten a hold of a stamp that was in Matt't truck.  How did we know...well the orangey evidence speaks for itself:

Kylie had been telling for several months now that she wanted to teach ballet classes...yep, teach.  So we got her started at a place nearby.  To make the transition from the lobby a bit easier for her, I made a weighted dance bag for her to carry her shoes in.  The heavy work is one of the categories to help calm her sensory system and help her focus better.  Here are a few pics onto how I did that:

I was way more nervous than Kylie was for her first dance class.  I know new people and experiences can really take it's toll on her, so I was prepared for the worst.  She was so ready and so excited to just do it.  They did not allow parents to come back and watch, but they had a live feed in the waiting area, so I could see how she was doing.  She was looking uncomfortable while she stood along the wall where they lined up to go back into the room at the studio.  Totally why I made the weighted bag...heavy work to help calm the system.  Here are some pics I got when she was getting ready at home and then as we got there.

So how did she do?  She was AMAZING!  I swear this girl was born to dance.  She was so excited and wanting to just dance that all those worry bugs were gone.  Until someone came over to her to give her a bit of instruction and then she was out of sorts.  I was in tears and so not having that I could not go back and record these moments...the moments I thought may not happen...our girl back there doing everything the other girls were doing and loving it at the first try. 

So, I asked the following week...wait, no the following week was for pictures and there was no class...yes, they forget to tell us newbies.  Kylie was not pleased with that and chucked her dance bag and tutu in the car as we left.  Then the following week, I asked if I could take some video and the lady said they just couldn't allow something like that.  Ughh..are you kidding me woman, I need to blog about this!  So what did I do?  Well, I took video of the TV screen in the waiting area that had the live feed :)  Yes, total bootleg looking video, but I got it!  Here is the video.  You will see Kylie on the end closest to the camera in her poofy pink tutu.

The lady said she would do some steps with Kylie after class for me to record, but then she changed her mind and I got one of Kylie on the floor.  We are currently looking for a new dance place for Kylie.  They gave her just a tiny bit of instruction on just one thing the first class, and then none more thereafter.  I want Kylie to know that dance class is a class where there is an instructor that shows you the proper way to do things, and you don't just dance around and do what you think you should be doing.  So the search goes on.  She loves it so much, I just need to fine the right place for her...and me :)

We made a stop at a Shoe Carnival one day, and goodness does Kylie love to try on shoes.  If it is sparkley and high heeled she loves it even more!  A couple pics of her with some pretty tall wedges on. 

Kylie's school got a visit from some firefighters at one of the local fire stations.  I instinctively knew that since they were coming on her Special Day, that it would make it more difficult for her to gain that experience of having them visit.  When things are new and different from the usual schedule she has a hard time, and will cling to us.  Here is a pic from my view sitting behind Kylie.  They were showing the kids all the gear they wear.

It's kind of funny, because all the older guys were sitting on the tables behind us, while they had the rookies up front getting their gear on and tell us about the things they do.  One little fact I learned, they need to get dressed and geared up in under a minute. 

The kids were not so fond of the guy when he was geared up and was crawling around on the floor.  I think it would have worked better to have the kids crawl to him.  Kylie was in a ball on my lap when he came around both before and after he had the gear on. 

Once everything was done in the room, we got to go outside and see the firetruck.  Kids got to sit in the truck and ring the bell on the front.  Kylie wasn't having any of that other, but I was able to get her to hold my hand to walk around the truck.  Hoping that next year, I will be smarter and not sign up for a Special Day on a visit like that, and that she will be more comfortable to see more things and maybe interact some.

Onto more fun things, the park.  My goodness, does this little girl love to run, jump, and climb.  I have learned that visits to the park shortly before naptime, ensures a good nap for Kylie....and momma :) 

This one park we like to go to has these little buildings, and all the kids there love to play in them.  You will see Kylie below in the jail. 

A super silly cheese pic.  I know, I know she is in the baby swing, but they took out the big kid ones, and the girl finally LOVES to swing. As long as she still fits, we are good :)

We then went for a walk around the pond at the park, and saw 2 turtles hanging out. 

Then there were the know, those crazy birds that follow you because they expect to be fed.

There she goes again...this was her first time trying this and I say she did great! 

Friday, May 18, 2012


The past couple of years we have taken to sporting our purple for Purple Day!  It wasn't until shortly after Purple Day 2009 that we even knew what Purple Day was, or how it would impact us.  With your help we would love to get more and more people wearing purple, not only on Purple Day, but during Infantile Spasms Awareness week, and National Epilepsy Awareness Month. 

I know, I know...look at us being all needy and asking you guys to wear purple a handful of times a year.  But when I stick this cute little face with it (see below), you will see that it is totally worth it!

For Purple Day this year, Kylie was all dressed up and ready for school.  I was so excited when I found the purple Super (Kylie) shirt for her to wear...I think it fits her in so many ways!

Don't you love the pearls!  She wears them often and just loves to wear necklaces to school.

Just love these next two...our purple princess!

So I snuck in to during her class time on the indoor playground and she was with her sweet friend that wore Purple just for her :)  Her teacher and para with sporting theirs as well...sorry, forgot to snap a pic of them.  She was getting ready to go in the sandbox...this is so HUGE for her, because she is not a fan of sand....personally, I don't mind :)

Last time we had our purple on we made cookies and decorated them with purple icing and sprinkles...this time we went a bit bigger.  You can see that Kylie was definitely a fan of some cookie dough.!  Trying to sneak some while I ran to grab the camera.

And now for the icing.

Yep this is good too momma, haha...I'm sneaking some more!

I asked Kylie if she wanted me to write Purple Day or Purple Kylie on her cookie cake...Purple Kylie was her vote.

So excited for her giant cookie cake :)

I love this...she covers her mouth a bit sometimes when she laughs, and I think it is the cutest thing ever!

Now onto some purple wearers.  We have a record for the littlest supporters wearing purple for Epilepsy and for Kylie.  They are identical triplets, and there momma was so sweet to send me these pics of them.  She said she thought of Kylie when she was putting these little lilac hats on the girls.  They are so precious and so awesome to wear their Purple!  What a wonderful mom to think of us when she just had her sweet little miracles :)


Here is our friend Cody, who shares the IS diagnosis with Kylie

Another friend dressing her adorable little girl in purple for Kylie!

Here is the girl that ignited Kylie's love for soccer, Kayla, and she is so awesome at the game!

Our family pic snapped with the handy little timer on the camera.   It only took a few to get this one, and I think you can see there was plenty of purple wearing in this pic!

Thank you all again for wearing purple, and I do hope I grabbed on the pics that we were tagged in for wearing purple for Epilepsy awareness and supporting Kylie and all her friends with IS and Epilepsy!

Before I let you all go, I pulled this little tidbit off the Purple Day site...If everyone told 2 people about Epilepsy, then the whole world would know.  So, get to it people...spread the word!

Wednesday, May 16, 2012

All in the name of...

Yep...she wrote her name up there!  I had to do a bit of editing to get it to show up, but it is the cutest thing ever!  There is so much about Kylie that is beautiful and I wanted to share some of that with you all.  Total reason for this blog. 

We were kinda behind on Kylie getting her 3 year check-up by about 3 months or so.  Anyhow, we went and with all of our preparations and playing with her doctor kit, I would say she did AWESOME!  She even smiled when I said something silly while the nurse was getting her blood pressure and things.  No surprise here, but she is in the 92 percentile for height, and 45th for weight.  Our little string bean.

I mentioned in a past post that Kylie has been doing some swimming for OT at school.  She just loves when she gets to go swimming.  She is even becoming more social with her OT even before we go back, and that is great!  She almost gets a little too high at times in the pool and looses focus on what she is supposed to be doing, but her OT gets her back into it and the little girl is tired by the time she is all done. 

Doing some heavy work with filling up the watering can and then pouring it on the "flowers" she had built.

Peek-a-boo, I see you!  Can you see the flippers she is wearing?  She saw them and asked to wear them.

Kylie was feeling not so great here, so Dadda was reading some books to her on the couch. 

Too many books, time for a nap.  This is the first time she has ever just fallen asleep on either one of us since she was a baby.  It was so sweet, that I just had to take a pic.

So I had been sick, and was going to doctors here and there, and Kylie thought of a way to make me feel better.  She said "momma, I want to make you a picture to make you all better."  I was listening as she got out all of her things, and she was saying, "God, please make momma all better."  So this is her letter or little prayer request she wrote up to God for me.  Just made me cry, it was so utterly sweet.

Just a cute pic from a day at the park. 

We were at Grandma Nancy's for dinner one day, and Kylie got to pick out some flowers for the dinner table. 

Can you find the big furry bumble bee that Kylie spied?  You know, the kind that should be in the category of small animals and not insects.  She was not happy when she saw it, and was sure to keep away from him.

I love this one, made me think of when I was little, "He loves me...he loves me not.."  Of course he loves you Kylie, you are just beautiful inside and out!

A pic she made at the end of her OT session one day.  We usually end each time with some feeding therapy, and then some art.  Sometimes we use the food to make our art...those ones don't get to come in the car home with us.  Anyhow, she loved this one.

Telling me how she was giving it to her dadda, so he could hang it up at work with the rest of his collection of her artwork.

Matt's favorite thing to do is fish, and now he has the best fishing partner ever...I mean heck, she will touch and hold a fish and I won't.  That's okay with me :)

Love those little fingers touching the little fishy.

Getting ready to toss it back in after dadda puts it in her hand.

So we went to surprise Kylie with seeing Disney on Ice.  In the beginning there was a lot going on to start the show, and not so much with Disney characters, so it took Kylie longer to warm up and enjoy the show.  Once she was comfortable she really enjoyed it and kept asking where Cinderella was...I made her a shirt with Cinderella on it, so she needed to see her :)

Loving the show!

Yay, there's Cinderella!

And her favorite Disney Princess, Snow White!

Not sure when this was, but she was being super silly giving kisses, and well that was definitely picture worthy!

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