Super Hero Doc Ready to Dance in the Parade

I guess every year, the Royals donate tickets to Kylie's school, so families of children with Special Needs can attend a game with a group of their peers, or may not otherwise be able to afford the cost.  We selected a game to go to, and Kylie had a great time there.  She even talked to the director of her school for a moment or two.  I remember the director saying "She seems so happy!"  I of course replied that this is how she always is, she just rarely shows it for others to see :)

 

 

Of course, a "cheese" pic!

The Royals now have a drum line too, and we were pretty close to where they played, and that was too much noise for our girl.  We just kept talking about all different things to help redirect her focus on something else.  It kinda worked.  I didn't get a picture, but Slugger (Royals mascot) had run by and he came right up to Kylie and put out his paw, and Kylie gave him a high five!  That was so huge for her to do that...all her friends parents and the director looked over like "OMG, I can't believe she did it!"

Okay, so this isn't the happiest pic of Kylie...she was not up for me taking some pics, but I really wanted to post one of this dress I made her.  She looked so cute in it too!

Kylie's school had it's 40th Annual Celebration, so we attended it for a bit.  They had face painting, and photo booth, and live music, and refreshments for all students and their families.  Kylie loves Funky Mama, and it just so happened to be Funky Mama's birthday that day, so we go her a card and Kylie gave it to her...woohoo for Kylie!  Even though she loves when Funky Mama performs, she will often just dance at home and not so much when she sees her.  Bribery works great, so look who we got to dance a bit to her favorite singer!

Kylie's last visit at her Developmental & Behavioral apptmt was horrific.  I honestly never heard her scream that way before, and it was tough on both of us.  They were just trying to get her height and weight, but we had not done that in the whole time we were coming here (about a year), so she couldn't accept that it can be done at this office too.  We made a couple visits just for height and weight to be checked, to help desensitize her again.  I learned that generalizing, often improves after doing this at 3-5 different places.  She can do just great at her ped's office...she knows that they always do that there, so she can accept that better.  So once we keep doing it every office we visit, we should see more improvement and less anxiety.  Here are some pics I got of one of our desensitizing visit:


Getting her weight...she was not so comfortable, which is why her hands are up on her head, but no tears so that is great!

Still not so thrilled, but once again..no tears!

Look at that, almost a smile getting her blood pressure checked!

I think our church offered up some great therapy for Kylie.  We walked in the Shawnee parade, and Kylie had a job of passing out candy to the kids.  It's funny, because she feels more safe when she doesn't know people...no expectations, I guess.  She did outstanding and loved it!  Having a job to do can also really help, along with the active movement...it was quite the workout for all of us to walk in the parade.  She was a great little helper too, she wouldn't just pass the candy out, but she often put it right in their hand, and she didn't want to leave anyone out.  We often had to tell her okay Kylie, let's go catch up with our church now :)

I think this was the evening after being in the parade.  After bath time, Kylie hopped on Matt's back to watch a little TV with him, before going to bed. So cute!

One of Kylie's friend's had a super hero birthday party, and it was just so cute because they had personalized capes for all of the kids and they just loved it all! 

Here's a shot of all the kids planning to save the city.  Don't you like that backdrop too?  I helped make it :)  It was a really cute party, and lots of fun..so glad we got to go!

Memorial visit and some Firefighting

On Memorial Day weekend we decide to head up to Fort Leavenworth to visit Matt's grandpa's grave site.  We had taken Kylie to a cemetery last when we were in Ohio to put flowers at the sites of all of my grandparents, and my uncle.  We also took purple flowers to them as well...for and from Kylie.  So as soon as we arrived to the cemetery in Leavenworth, she said we need to bring flowers.  So we visited for a bit first. 

You can see she brought her penguin...she wanted him to meet her penguin.  There was a pic I took (not posted here), where she was helping her penguin wave to him and one where she put the penguin on top of his stone.  She is so sweet.

I just love how she is staring at everything here.  So beautiful..I know they must have shared a moment here.  You will see the flowers she picked out for her great grandpa.  We stayed a little while longer and fixed all the flags that had fallen over.  It was at that time when a man pulled up at the top of the hill and started playing the bag pipes...it was just surreal and so perfect for all those that were visiting loved ones over the holiday weekend. 

Not too far from where we were was this tree.  It is the first time Kylie climbed a tree.  Something Matt said he did with his grandpa, so it will be something for her to do with him watching every year.

Since Kylie's school visit from the fire department was not a hit, we knew we wanted to sign up and attend the Annual Children With Special Needs Fire Department Fun Day at a local fire fighter training center.  Yay, here she sitting in a fire truck.  They had lots of trucks there and this one was off to the side without much traffic of people coming by, so it was the perfect one for checking out and hopping in!

They had a few different demonstrations going on, and this was just one of them.  They had a propane tank and the sound of it, along with the flames and water were anything but pleasant to our sensory girl.  She got pretty upset, but we were able to distract her and talk through things to help her calm down some. 

They also showed us some of their tools they use for auto accidents.  I did learn that what we all hear about as "the jaws of life" is known to the fire fighters as "the spreader."

Hey, what are you doing with that door!

They had some guys rappelling down the sides of buildings too.  Kylie was okay to wave to them from a distance, and she was good with just that.  When the guys would get close to the ground, they would flip upside down and the kids thought it was fun to give high fives to him while he was upside down.  Maybe next year she will give a big high five to the spider man guy :)

They also had a small little RV that had a kitchen and bed, for the kids to practice what to do in case of a fire.  As soon as someone acknowledged Kylie she would run out the other side or turn away.    She went in this little house of hers over and over again.  This made the lady and guys inside a little less scary, because she had seen them so many times.  They had firefighters outside the window to help you climb out.  When she figured out they were getting her out, she wanted nothing to do with that.  They said it was okay for Matt to do it, so after several run through of the house, she finally climbed up for Matt to help her out.  Then then did it several times thereafter too.

So there was this aerial ladder on one of the trucks that went up way to high for any sane person to go on.  Just look at how high they went!

Well, we wanted Kylie to try everything, so that meant that we had to do it too.  We told her she could have the candy she was given, but not until she got in the bucket to go up.  I can seriously say that, I don't know how any of us did that....they things you will do for your kids!  I wanted to move over so Kylie could look down, and somehow my feet were like glued to the floor...I was terrified of moving!  We did it though..just look at how high up we were!

Here she is asking me to open her candy :)

The Shriners had some of their little fire trucks there too.  They were taking kids for rides in them, but that was a bit much.  It was several passes later until she would go up and ring the bell to one of them.  She loved it too!

They had face painted there, and I could not believe that Kylie said okay when I asked if she wanted to have something done. She said just on her hand, and we will take it!  Funny thing was, that the lady in the white shirt came to our house several times when she was shadowing the OT Kylie had in the Early Intervention program she was in.  

Kylie ended up getting an ice cream cone painted on her hand!

They also had a couple fire trucks taking kids and their parents for rides.  We tried one time and she was just a mess of tears when it came to be our turn.  We got back in line later, and we got to see some of our friends from school go...we were trying to use that to fuel our ideas for how fun it was to go on the truck.    Once Matt started to put her up and in the truck she melted down, but we stayed put and got buckled in for the ride.  A minute or so after we took off, she had calmed down...she just needs to get over that hump, that anxiety of trying new things for her to see it's okay, safe, and even fun :)

Still a bit gooey from the tears, but trying to check things out...hmm, this is okay.  Wow, she did it..we did it together! 

They even had a helicopter from Children's Mercy fly over and then it landed right near the little house that Kylie was playing in and climbing out the window. 

Taking a peek inside, but holding on tight to her dadda.  It was tight quarters, but so glad they have that transport system for kiddos that need it. 

 

They also had an ambulance at the site, and one way to get Kylie to see that it was okay to hop in a look around was us telling her that she was in one when she was a baby.  After some passes by, she stepped inside...I think it was when the girl was talking to someone else, so she felt safer to not have to deal with anyone.  Heck, she did it though :)  I kinda feel bad, because now when she sees an ambulance, she always says "I was in one when I was a baby."  I just don't want too much emphasis on that, but yeah..she was when she was sick, and then she got to hop in one at this event...well and ready to check it out :)

It was a long day there...about 3 hrs.  But we wanted Kylie to do everything that we know she can do, and that she deeply wants to do, but her anxiety to holds her back.  We were willing to stay as long as it took until she was comfortable enough to at least try all the things they had.  With much effort and repeated attempts, she did so much and that was great to see!

Orange Popsicles and Some Zoo Time

I noticed that Kylie's Royals dress I made her last year, was not quite fitting her as well this year, so I just had to make her another one :)  Doesn't she look like the cutest little Royals fan?!  Matt said a few different women at the game complimented her on the dress, and some even asked to take her picture....they wanted to capture the cute dress to replicate it.  My sweet, and smart girl told them no and ran away..lol  

Nothing says Kansas like humidity and high temps.  I think we had some 90 degree weather or so in May, so it was time to play outside in the water.  She is just so darn cute in that swimsuit too!

Silly scrunched up face.

Nothing better than water play outside with the slip n side and sprinkler to guarantee a nap in the afternoon.  But note, be sure to play about an hour before naptime...if you play too early, no nap.

Our new friends from church were celebrating National Orange Popsicle Week, and Kylie wanted to get in on the action too!  NOPW is to celebrate life and remind us what a stroke is and the effects it can have.  Click here to go to Amy and Jonny's blog to learn more about her incredible and miraculous story. 

Kylie is the #1 Mill Valley Girls Soccer fan.  The girls team went to the state championship game in Topeka, so we had to let her see the girls play!  Just look at how happy she was to be there cheering for them :)

There they are, the state runner-ups in their division!  They were great, and we loved supporting and cheering for them all the way to state!

Okay, one more pic of her...this one was a bit sweaty, but still cute :) Oh, and one huge thing was after the game we waited for our favorite player to congratulate her on a good game.  She picked Kylie up and Kylie smiled and didn't try to wriggle away...she gave her fives too!

While we were in Topeka, we visited the zoo.  Kylie actually stuck her head through these cute litle penguin cutouts for some pics...woohoo!

She sure does make one cute little penguin!

Hmm...I think she was peeking through to look at the giraffes in this one...cause peering through the slates of a fence is so cute that I had to take a pic :)

She is definitely daddy's little girl..love shots like these!

Climbing the gorilla...take that King Kong!

We even got a "cheese" pic!

I think this girl has got that lion tamed...so loving that she is now starting to be still for pics...getting her to look at the camera is a challenge, so I take tons of pics and hope to get one or I have Matt dancing behind me trying to get her attention.

Kinda cute seeing the big old hippos taking a nap.

Yep, she sure is a cute penguin!

Yay for the black bears!

Not so cheery when the real thing was walking toward her...she was just in awe :)

Time for bear hugs...literally.

There is just something about little feet...one day they will touch the ground and still be cute, but this is just adorable to me.

She asked for a little penguin after we saw the penguin exhibit...it was a small one with just a few penguins, so she got a little one to match.  She loved it too!

Feeding the goats is always so much fun...I love the way she laughs and giggles when they take the food from her. 

We can't forget the elephants...how can you, they are so big!