Miniature Stump

All things Kylie...and more

2012-01-26T15:37:00.004-06:00

So I thought once I did the last post with Halloween and such, that I had completed all things from October...not so much :) This post is going to be a mix of all sorts of things and stuff we did in October.

Not sure what this was from...nothing more than a cute pic :)

Followed by another cute one...silly laugh this time :)

Matt's mom has a beautiful rocking horse in her house upstairs. We can see it from the living below and have visited it many times. This was the first time Kylie wanted to sit on it.

I'm pretty sure she likes it! She has been on it several times since...yay, or no...yeehaw!

Just a pic of Kylie being silly at lunch time one day. She is silly just like Matt!

I decided that since Kylie was bringing home so many things from school, that we needed to display them in her playroom. So I got a strip of fabric and tacket it up like a clothes line of sorts, and we hang her pics on it. We change them out when she gets new ones....like every week :)

This was from another pumpkin patch place we went to, and I just thought this pic of Kylie holding Matt's hand was just so cute. So yes, some photo editing, and here you go.

We went to the park later that day...it was just too nice out not to. Kylie loves to climb and can get up just about anything she sees.

Coming down the slide!

Kylie went in for another hair cut. She did so great! Just put her in the jeep, and pop in a movie and she is good to go! It doesn't get much better than that!

All done after her haircut!

Every year in October (for the last couple of years), we have Infantile Spasms Awareness Week. This is a time that we try to draw awareness to the devastating form of epilepsy that Kylie was diagnosed with as a baby. One thing we like to do is wear purple to show our support for epilepsy. Here are some pics I got of Kylie that week sporting some purple.

Not only was she wearing purple, but she found some of my shoes and was walking around in them....she walks in them way better than I do :)

Oops...she slipped out of the shoes!

Holding my hand...love this!

Yep, she's a purple princess!

"Ohhhh mom, do you have to take another pic?" Yes, yes I do.

Some of our friends from church put a team together for the Step Up for Down's Syndrome Walk KC, and we went to show our support.

Yay for team "All For One, 21 For All!"

LC and Jace ready to get this walk a moving...love these guys, they are so cute!

Dariya...just loves those eyes of hers!

Dariya's sister Alayna was not able to make it. She was sick and in the hospital just the day before. We all walked for her too!

Boo!

2012-01-18T20:53:00.009-06:00

Yes...it has been awhile, and I have gotten behind on blogging. Matt says to pick up the posts from here on out, but I can't...I gotta do Halloween and Kylie's birthday and everything in between and there after.

Here goes!

I know I did some pumpkin-y posts, and now we have Halloween! One night, Matt took Kylie with him to the store and just 2 minutes or so after they left...he called. He told me that he asked Kylie what she wanted to be for Halloween, and he wanted me to hear her say it. So while on the phone, he asks her what she wants to be. I hear her say something, and instantly thought that it just didn't make sense. So I suggested Tinkerbell, because it started with the same letter as the word that I thought I heard her say....nope.

Before I tell you (for those of you who don't know), here is a video of her telling us....yes, we had to record it because it is that unique :)

There was no convincing Kylie that she could be anything but a triangle for Halloween. If we suggested anything else or questioned what she wanted to be...she would totally melt down. It was almost like we were questioning who she was....a triangle. Oh and not just any triangle. She said she wanted to be a light blue triangle. After all, blue is her favorite color.

Here are the hand puppets I made for her friends in her Kindermusik class.

This was the first time she got to wear her costume...she did not want to wear it. Umm...as simple as it was, it was somewhat of a challenge to construct a triangle, or at least figure out the best supplies to use. We told her she could take the hat off, once all of her classmates arrived.

Hmm...I bet she is thinking that she can not believe she is really a triangle...her dream come true :)

She is starting to get nervous about going into the classroom...trying to hide.

Getting warmed up with some scarves.

Story time with Miss Miranda...she loves her so much!

Triangle Costume take 2: Next was trick or treat at her school. Here are the finger puppets I made for her classmates.

The kiddos waiting for all of their classmates to arrive, so they can get started...they are all so cute!

So much cuteness in one pic!

I swear it looks like they are all lined up for a mug shot..lol

On the hunt for some more candy.

She was kind of nervous at first, but then got the hang of it....she started checking the goods before taking something....going for the chocolate :)

Triangle Costume take 3: We went to visit Grandma Nancy at her work, and went trick or treating there too! The girl had tons of candy by the time it was all said and done with! She already had some practice and was doing great with saying trick or treat and thank you after a couple of stops...yay Kylie!

One of her first stops...trying to hide her face, but shortly after she had a run of the place and did fantastic!

Triangle Costume take 4: No pics, but we did go to Matt's work...it was his first day at his new job! Everyone was so nice, and it was a great way for Matt to re-meet people he had met earlier that morning. No one will ever forget him, especially after meeting his cute little blue triangle :)

Triangle Costume take 5: So what would good would a costume be if you can't ring doorbells and knock on doors. Kylie was a pro by the time Halloween night was here. She loved it too! By this time, she had already figured out that "okay, I have to interact with people, but they give me candy...usually chocolate, which I love." "I can do this."

She was so great, that we waited on the driveway or at the bottom of the steps, while she went to the door. It was soooo great to see this!

I love this...sucker in the mouth, and trucking on for more candy. She had us hold her sucker while she went to get more :)

I got a pic of our shadow holding her hands....love it!

Sew...where are all the blog posts?

2011-12-08T17:45:00.000-06:00

Okay, so I know I have been far and few between on blog posts for quite a while...but I am trying to catch up, promise!

I must tell you what I have been doing with all of my time when Kylie is asleep...apparently it isn't blogging :) I have been sewing, and crafting and with that comes taking tons of pics, and then editing them, and posting them onto FB. I have recently created a FB page for all of the things I have been creating. Just click here and you can see it....oh, and you can become a fan too! My page is titled :

Why Mae Blossoms? Because Mae is Kylie's middle name, and well the Blossoms part is because she is just so darn amazing and beautiful, just like a blossoming little flower. I think the logo is so cute and just perfect! Matt's friend, Branden Hughes designed it for me last year, and I am finally starting to get things rolling for my little business of sorts.

I thought I would show you all what I have been creating. So just scroll on through to take a look. Hope you like!

Lots of Clothes

Accessories

Kids Play

Your Toddler Can Read

2011-12-05T21:26:00.006-06:00

Ran to Home Depot this evening to see about a new toilet seat. Apparently they make full-size toilet seats with built in kiddo-size seats in the lid. Anyhow, Jody heard about these somewhere so we went to check them out. Exciting, I know.

Now, when we're out and about, Kylie will tell us when she sees a Wal-Mart, Target, Home Depot, etc. This is obviously just based on memorizing the logo. No big deal, right?

Well, tonight Jody and I were looking at this fancy, dual-use toilet seat when we hear Kylie talking behind us. I turn and asked her to tell me again, and she said "look, a Kohl's seat". When I looked at the label on the display, here's what I saw:

Amazing, right? While the font is similar, she picked out the KOHL and linked that back to Kohl's department store, which we frequent fairly regularly. We hadn't mentioned "Kohl's/Kohler" while there, and Kohl's certainly doesn't sell toilet seats (at least, I don't think so). After hearing it, Jody and I just kind of stared at each other for a second or two...smiling in disbelief. I asked Kylie to repeat and snapped a video with my phone:

I'm a little snowman

2011-12-03T15:00:00.005-06:00

So last night, Kylie's school held a Christmas Program at a nearby church. Kylie was so excited to wear her pretty dress that Grandma Nancy got her. After getting her all dressed, she said "I look like Cinderella." Yes, a princess indeed!

Here is our princess putting on her shoes just before we left.

She's ready to go!

This was just a little bit after we arrived. Grandma Nancy and Frandma were there to see Kylie on her special night. Oh, and you may have noticed the wand. Kylie asked us before we left if princesses used wands...of course they do! So we let her bring.

Wondering who she will grant a wish with her wand.

She absolutely loved twirling, and showing Grandma Nancy and Frandma how her dress moves when she spins...too cute!

A brighter version of the pic above...loved them both and couldn't decide which one to post :)

This was the program for the night. They had 17 songs, and Kylie's class was #14 on the list.

Kylie was sitting with us the whole time and was doing really well. I do think that after the first song she realized what was going on. Each class would go up on stage and do their song...meaning, they had to really do this,and that she wanted nothing to do with that. After each song, she would say "all done" and that she wanted to go home.

Of course I immediately started to worry about how this was all going to turn out. I was such an emotional wreck to begin with...this being her first school program, she's getting so big, wondering how to go about this (do we disappear and let her teacher come snag her, do we take her up there, do we make eye contact or not).

One of my most guilty feelings was just being there and seeing so many families with children with disabilities and how we were all a part of it. I almost started to cry a few different times just being there...before my concerns about Kylie started seeping/weeping out.

Kylie spotted one of her classmates sitting up front with some other kids in the aisle, watching the kids up on stage. She really wanted to go over there, and with some nudging...she did it! She went over to the aisle...no longer attached to us...hooray for Kylie! So below is a pic of her just moments after she crept into the aisle to see her friend. She looked over with a little smirk..as if to say "look, I did it!"

Kylie got a little closer and closer to her friend...she didn't want to talk to her just wanted her friend to see her. It was so cute watching her move around until her friend saw her there. They both got so excited when they saw one another. It was so cute! In the pic below they were going back between admiring one another's dresses, and looking at their own dress as if to say "look at my pretty dress."

All done eyeing one another's fashion, and watching the show.

A song or two before it was time for Kylie's class to go up, I snuck over to her teacher and asked her if she would want to get Kylie, because we knew there was no way we could do it and have any chance of it working out. She said she was concerned about Kylie, and said she would have no problem doing that at all. Once it got time, another little one in Kylie's class was going by, so her teacher grabbed her and before she had a chance to get Kylie...she figured out what was about to happen. I then had to pick her up and kicked and screamed and just melted down in an instant. I got over to her teacher and told her that I did not know what to do. I started to pass her to her teacher (who Kylie loves), and she just wrapped her arms and legs around me so tight and screamed. I knew then that it was absolutely not going to happen. Her teacher said not to force it, so I melted right along with Kylie and we were both crying. Oh, what a mess...mother and daughter crying together and just wanting to be somewhere else.

I wanted so much to see Kylie up there singing her song that she had been practicing at school for weeks now. It was so much more than wanting to see her up there...wanting to see her be a part of something and not so terrified to do it, seeing the growth she has made...that we have made together , and building my hope that everything will be okay. It's just tough sometimes to see that your child is not where you want them to be in their development, and even though you may know it...it comes to life more when you see it before you. I know being up there is scary for anyone...I wouldn't like it much either, but the night had much more meaning than the stage...it flooded my mind with where we have been, where we are now and how we got here, and what lies before us.

I will try to get her to sing the song and record it...until then, here are the words:

I'm a little snowman

Short and fat.

Here are my buttons (pointing to their buttons),

Here is my hat (point to had on head).

When the sun comes out

I can not play.

I just slowly, melt away.

All things Pumpkin

2011-11-29T14:28:00.021-06:00

Trying to get caught up here on posting...so here goes...let's get some pumpkins! A nursery nearby, has an Oktoberfest every year, and they have all sorts of activities for the kids...so we went!

Kylie found her pumpkin!

Oh, how I love little hands!

Dadda helping decorate her pumpkin with some stickers.

Yay, momma gets to help too!

Ta da!

Time to run through the maze...okay, so I got lost the 2nd time we went in, and got a bit worried. Kylie loved it!

Hmmm....which way to turn?

I think t I got it!

I made it out! What's next?

Kylie LOVES popcorn!

We got to see a fire truck...Kylie was as tall as the tires!

The quickest pet of a bunny ever...but we got the pic :)

Running in a place where there are no people...just getting some space.

Feeding the donkey some hay.

More space

Look at me...I'm drinking out of a cup! She just learned this...so big!

Peek-a-boo

Planting a flower with Dadda

Pretty purple pansies!

Sandbox...wait no, it's a corn box! She wasn't so sure about it at first, but after watching others and testing it out slowly....she loved it!

Just a couple days after going to the Oktoberfest, Kylie's school had a field trip to the KC Pumpkin Patch...so off we went!

Hey momma, I want to take pictures!

Kylie and one of her classmates checking out the pumpkins.

She was so uncomfortable to do this...not a fan of posed pics in the least.

Time to jump on the big giant pillow! So I must confess that she did not want to do this....I told her to go ahead while I took my shoes off. She started to go, then got scared, so I went with her....until she realized how much fun it was!

Hooray, because if she didn't enjoy it...there is no way I could have got this pic of her jumping. Can you just picture me trying to hold her hands and take a pic...all the while bouncing around.

The next thing, was this little train ride...it was so cute, and don't they look like a little couple going for a Sunday drive!

So .5 seconds later, Kylie wanted out...like pronto. I was amazed that she even got in it, but she quickly realized it was going to move...and I wasn't going to be on it with her. Maybe next year.

More little hands....feeding some goats!

Putting some food down the tube to feed the....

...3 little pigs!

We took a tractor ride to the pumpkin patch to find a pumpkin

I think she found her pumpkin!

Someone was so kind to take our picture with our pumpkin!

Kylie and her teacher talking about how pumpkins grow....she LOVES Miss Janie

Heading back on the tractor...holding her pumpkin down with her little feet....love this pic!

Snack time...where's my food?

Mmmm....cider donuts! Kylie does not like when anyone sees her eat something new, or just seeing her eat. So she was hiding, while she ate her cider donuts.

Kylie quickly became friends with a girl from another class at her school.

It was so cute to tsee the two of them running around chasing each other!

Yay for duck races!

Wheeeeee!

Searching for land in the seas.

She found some land, or a giant pumpkin!

So I could not walk by without putting Kylie in the giant chair with her pumpkin....so cute!

So many more pumpkins!

All in all, it was a great day at the patch with her school and classmates!

I do...I do wanna dance (2 new pics)

2011-11-27T10:17:00.001-06:00

Back in Septemeber, our neighbors got married in Chicago. We made the trip to see them on their special day, and Kylie was soooo looking forward to dancing at the wedding....loves to dance!

It was about a 9 hr drive or so, and Kylie did great...lots of snacks, toys, etc. and she is good to go. We told her we were going to Chicago to see our friends get married. A few times she said "hurry up and get to Chicago before it closes!" We are pretty certain she thought Chicago was a store, so this was pretty cute.

This pic is actually from before we left for our trip...I was trying out the dress I made for Kylie to wear for the wedding. She is starting to really like wearing pretty dresses now, so it is pretty fun and sweet :)

Kylie and I getting ready for the wedding...talking about dancing I am sure!

Kylie giving me a super cheesy smile for a pic...amazing to get this, because she never ever smiles for the camera

In the elevator on our way down to the wedding

When we were downstairs in the lobby before the wedding started, Kylie decided to hide behind the curtains. Where is Kylie?

There she is!

Then she found some books to read...no pictures in these books, so she did some speed reading.

Below is a pic of the bride and her family...Kylie loved her pretty white dress!

In between the ceremony and reception, we went back up to our room to see if Kylie wanted to rest...she just seemed so tired. I tried to get a pic of her and I together...you know where you just hold the camera out in front, and end up with a bit of a close up. I said, say cheese and give a big smile...well, this was what we got.....still makes me laugh to see it!

Shortly after the last pic, I got this one....sleep girl, and the party hasn't even started.

Once the reception got started, she was ready to hit the floor, but it still wasn't quite dance time yet...it was time to eat dinner and she was tired (didn't get to nap much) and could not understand why it wasn't dancing time. She had a meltdown, or two, or more...but after a few walks outside, she calmed down. Once dinner was done, she ran to the dance floor. Just take a look for yourself:

One of the things that made it cute was to see that Kylie had her own little place card...she truly had her own little place at the wedding. You know, on the dance floor!

We had so much fun at the wedding and everyone was so nice, and just thought Kylie was adorable! Just look at all the fun everyone was having at the wedding. Just incredible and such a great party!

We just got these next two pics last night....so cute! Dancing the night away!

She was such a tired little girl...this was shortly before we headed back to our room. No smile, but that's not our Kylie...she doesn't pose for the camera...just not who she is. Who she is though...is amazing!

This picture was taken not long before we headed back to our room...she was just so tired. She even told us she wanted to go ni-night a few times...so she was definitely worn out. I edited it a bit and sent it to Matt at work one day....she was just so sleepy...so sweet.

Just as we were saying goodnight to everyone and head up to our room, the band started to sing Billy Jean by Michael Jackson. Kylie LOVES him, and will dance up a storm when she hears his songs! So we ran back in and danced to the song before calling it a night. It was a great wedding, and we are so glad we got to be there and share in our neighbor's special day!

The place where dreams come true

2011-10-22T20:25:00.001-05:00

So it was super hard to not post about this, but we took Kylie to Disney World this summer. Why not post about it? Well, Matt was interviewing down there, and we couldn't exactly broadcast that. They flew us all down there, and we decided it was a good chance to go to Disney! Now that Matt has accepted a new job, there is no need to keep it to ourselves anymore :)

In the hotel, getting ready to head to Magic Kingdom. Kylie's face is as if she is saying "Pics later, Disney princesses now."

Getting in line to get our tickets...so close!

Me pinning Kylie's 1st Visit pin on her!

On the ferry to go to the Magic Kingdom....she made a friend and was telling him that she was going to see princesses!

Waiting for the Disney Castle to come into view

We can see it!

Am I really here?!

The show started just a few minutes after we got to the castle.

Dadda, look!

Just a little clip while we waited in line to see the princesses

Meeting the princesses was definitely full of memories to treasure! It was a mix of therapy...trying to interact with these new people. They were princesses so it made it a tad less stressful....she loved it!

Yay for making eye contact with someone new!

Woohoo...letting Belle hold her hands!

Trying to give Cinderella a hug!

Yay..she did it! A bit unsure, but who cares :)

Letting Cinderella hold her tight...this is seriously making me cry...she did great!

Haha..this is blurry, but she was totally not having the Mickey ears on her head...love this face!

Take it off

Shortly after meeting the princesses, we found some mice to hug! Kylie was uneasy about the whole hug thing, but she knew it was just something you do when you're at Disney!

Hmm...where to go next?

Okay, so meeting Snow White was definitely the highlight of the trip. We ended up being the first ones in line to see her, and she was in love with Kylie! She talked with Kylie for such a long time, until she was finally comfortable and really enjoying her time with Snow White.

After just a couple minutes, Matt told Kylie that we had to go, so others could meet with Snow White. Snow White looked up and said, "We are not done yet." It was so cute and funny that a princess told Matt what the deal was....I guess she was just preparing him for all the days that Kylie will do that :)

Anyhow, the visit was so great and Matt snapped so many pics that if we scanned through them quickly, it was like a flip book where you could see the whole story of their visit unfold. It was adorable! Onto some pics:

I SOOOO Love how Kylie reached out to Snow White!

Happy tears for us!

Let the talking begin...

...look at those pretty pink toes!

My favorite part....Snow White touched Kylie's nose and then Kylie did it right back! Holy cow...such awesome interaction with someone new! Okay, so Snow White is a well-known princess, but still....it was absolutely incredible to see this!

So precious!

Our hotel was just 15 minutes or so away from Disney, so we decided to go back and rest for a bit. Once we were rested up we went back to the park. So below is part 2 of our visit.

We just had to go back and visit the princesses again...there was no wait the 2nd time around...it was great! It appears that we only took pics with Cinderella this time, but it was fun! I snuck in on this one, because well...Cinderella is such a classic and I was living through Kylie just a tad :)

A pic of all 3 of us with the Disney Castle in the background

I got a clip of Kylie and Matt on the Dumbo ride. See if you can spot them!

We traded off with another family taking pics of one another on Dumbo

We were planning on heading back to some more attractions, until we saw people already camping out early for the Electrical Parade. We thought we would find a spot too and stay late for the parade and the fireworks too. I am so glad we did, because just look at the joy on Kylie's face:

Tinkerbell...Kylie's favorite!

I just love how her face it just lit up with amazement!

Totally crying as I see this pic...she was so surprised and loved everything she saw!

Now I know why they say this is the place where dreams come true!

This was on the plane on our way back...Kylie let Matt put earphones in ear her ears...such a huge thing for her!

It was an amazing experience that we will never forget. Kylie still talks about going to the Disney Castle, seeing the princesses, Tinkerbell flying down from the castle, and many many more memories. Loved the experience and all the memories we created in such a truly magical place!

Let's Go....Keep it up!

2011-10-10T22:47:00.007-05:00

Let's Go (clap clap) Let's Go Team Kylie!

Keep it up ! Keep it up!...Keep that Kylie spirit up! Say Keep it up (clap clap clap)

Okay, now that you are all in a feel good and cheering mood, you can get your megaphones and pom poms ready to cheer when I tell you that the fundraising through Kylie school has been extended until November 2011! I have been meaning to post about this for a couple weeks now, and I am finally tying to make that happen.

We just ask that you take a look at Kylie's page and read the bit about why the Britain Center is such an awesome place for Kylie to be...for us to be with her. I do not want to imagine what things could be like if it were not for all the amazing staff and educators that make everything happen for not just my child, but for so many others.

Please click here on Kylie's page and free feel to donate any amount you can give. Everything is for the Scholarship Program at IDC....it affords a number of children the opportunities that they would be without, if not for the scholarship program.

Below are a few pics of Kylie working on an art project with me at home. Mind you, this was the day following her not painting at her other school...the one we recently took her out of. You will see how great Kylie does with this....she was hesitant, but talking to her about all the things she can make and do and the colors to use, etc, helps ease her into it.

Here are some pics of Kylie and the greatness that has aways been with her and is coming out more and more:

It is so much more than the team at the Britain Center getting Kylie to do some painting, they are right by her side when she is struggling, or if the anxiety causes her to not be a part of things. They work to find ways to bring her back and help us learn what is best for Kylie in those situations. It is an ongoing process, especially since sensory is so unpredictable...we are on Team Kylie and ready for anything!

Feel free to join with us and click on the links or at the donate box on the right of the blog.

Thanks so muc

A whole new world

2011-10-01T20:41:00.002-05:00

So remember when we went to the Royals game? I mentioned in this post that we met some great folks while we waited in line to run the bases after the game. Well, it just so happens that Kylie made quite the impression with some of the guys we were chatting with. They were all so great, and one of the guys and Matt had a great time talking about baseball and much more.

Just a few weeks after the game, Matt received a package at work for Kylie. It was that very day that Kylie and I went up to visit Matt at work. She was so excited when Matt told her that he had a surprise for her...she eagerly opened the box and had this great big smile when she saw what was inside!

Just look at how happy she is with Ariel!

She even told me that Ariel was going to sleep in her room with her! That is huge, because I have suggested this to Kylie with past toys and such, and she would say no. You see, she has 2 dolls and a bear that have been in her bed since when she was in a crib...as far as Kylie sees it, they are the only ones allowed to be in her bed.

She ended up not taking Ariel with her to bed, but Ariel is her new best friend, and loves taking her everywhere!

I'm not sure why or what, but we went and got ice cream after we saw Matt, and Kylie had to lay Ariel down on the little table with her...so Ariel could watch her eat her ice cream :)

So yes, what A Whole New World it is when you see that your child touches another's heart, and they reach back to do the same to you. Thanks so much again to our friend for thinking of Kylie and sending her this gift!

Princess Kylie

2011-09-30T23:14:00.000-05:00

Kylie's Grandma Nancy got her the most beautiful tutu dress I have ever seen. Just perfect for Kylie and oh my, did she look absolutely beautiful in it!

Once we got home from Grandma Nancy's, I bribed Kylie with some cookies to put it on for me...hey, whatever it takes :) Just in case you are wondering...M&M cookies will do the trick for Kylie! Here are the couple of pics I got of her that evening:

Seeing how much fun she had in the dress, and how fitting it was for her...just like a princess! I decided to take her out to the park the next day and let her run barefoot while I snapped some pics. Okay, so it was more than just some pics...I took 240! After editing about 50 or so pics, I decided I absolutely had to make a video out of it. The search for the perfect song was more of a challenge. I knew it had to be some sort of princess, fairytale...just a beautiful song.

After getting some suggestions from friends, and searching for those songs...this one song came across the screen in the list of additional songs to view. It was perfect, and it features the Tangled movie in the video....which coincidentally is a movie that Kylie first watched at her Grandma Nancy's, and she requests to watch it every time we visit!

Now I know that since I am her momma, I am a bit biased and think she is the most amazing little girl ever. With that said, I seriously had tears running down my face once I previewed the video with the song....I couldn't even finish watching it. I know they were happy tears, but wow...I just think the song and pics together are so incredible! So yes...get those tissues ready.

Make a video - it's fun, easy and free!
www.onetruemedia.com

All things Kylie

2011-09-24T21:12:00.000-05:00

It's looking like I'm about a month behind on some postings...the pics in this post are from my August 2011 folder.

So I stole this idea from our friends Pudge and Biggie, hope you guys don't mind :) The first time we played with something like this was way back when one of our libraries had an event called Ooey Gooey, Icky Sticky...wow, she looks so little in pics on that post!

So here is what we did. We got a bottle of hair gel, and squeezed it out into a ziploc bag, and then added some food coloring. We sealed the bag, and put in inside another bag...just in case it decided to leak. Then we squished up the bag to get a uniform color. Then we had some fun pressing shapes on our bags!

So Matt and Kylie used to read books in her princess tent before bedtime. I'm guessing they have outgrown the tent, because they now read books in her closet. I think it is so cute, and she loves it!

One of our favorite places to go is to Deanna Rose Farmstead...the cutest little petting zoo ever! Somehow I have neglected to take our camera each time we have gone...sorry. We planned to go one day when they were having Safety Day, but it was pretty toasty out that day. We pretty much ran through the little stations and went home. We did however get a little fireman's hat, and I got a couple pics of Kylie a few days later with it on. Too cute!

Not too sure about the silly little string that goes under her chin.

Since Kylie was starting school in just a week or so (at the time), we decided to get her hair trimmed a bit just in time for school. Below is a before pic...don't you love the cheesy smile she gives when we ask her to smile for the camera :)

Driving in her Barbie jeep and watching a movie while getting her hair done..sign me up!

All done!

We had met our good friends at the hair salon, and Kylie's little friend got his hair cut too. We went over to a new little shopping center and let the kids play about and run around the fountains...they loved it!

So is seemed like for a few weeks...or an eternity, Kylie was not wanting to nap so well. It would take her Forever to fall asleep, and when I would go in to wake her (because she would nap too long....ha, no such thing, right?) so she would go down at night for us, I would not find her in her bed.

The first time this happened, I actually started to panic a bit because she wasn't immediately visible to me. I had no idea how she could not be in her room. Then I saw some feet sticking out...just see for yourself.

So she finally gave up and fell asleep in her tent. So cute! Another time I had gone in to wake her, she was on the floor. Doesn't look so comfy to me...at least the tent has lots of friends (stuffed animals) in it for cushion. Oh well, I guess kids really can sleep anywhere.

There was a Friday where Kylie and I crammed so much fun stuff in the day, that I felt like super mom or something....no idea where my energy came from. We did therapy in the morning, went to the mall, to the park, came home for lunch, and then went to the Lenexa Waterfest....they had all sorts of fun stuff for things for kids there.

I had never been before, and they had lots of booths set up for kids crafts and activities, free hot dogs, pizza, and ice cream...woohoo! They had cane pole fishing too, and Kylie and I caught the tiniest fish ever...Matt was proud when we told him about it!

They even had one of the fire trucks shooting out water for the kids to run through....it was the cutest thing. Sorry, no pics of that..it was a bit too much for Kylie. Anyhow, here are just a couple pics of Kylie going up one of the little water slide things.

While we were there she saw a kid playing with a little frisbee ring, so we had to find the booth that was giving them away, and give it a whirl.

Ummm...how does this thing work?

No idea what this was about... just a cute face

This was later that evening when we got home and we were playing with the fishy she made....she was telling me that she was not going to smile for me.

Fishy was hungry and decided to eat her finger....she is so silly!

The very last thing before bedtime was to make the little magnet craft we got at one of the vendor's...she gave me a great big smile and it was the perfect way to end our fun day!

Prelude to Halloween?

2011-09-18T21:01:00.004-05:00

So I have asked Kylie a few times what she wants to be for Halloween...she doesn't really get what I am asking her, but she knows she gets candy :)

Anyhow, I was sewing the other evening and Matt took Kylie to the store with him. While driving there, he asked Kylie what she wanted to be for Halloween. He then called me and asked her again while on the phone with me.

I thought I heard her correctly, but then thought...no, she must have said something else. Nope...I heard her right the first time.

Here is a short video Matt got of her this morning to see if she still had the same answer.

Make a video - it's fun, easy and free!
www.onetruemedia.com

I'm thinking that maybe if we don't talk about it for a little while and ask her again, that she will forget about wanting to be a triangle. A triangle, really? Maybe, I can convince her that Tinkerbell is the way to go....she absolutely loves Tinkerbell right now... 'til then, a triangle.

Let's do this Royals!

2011-09-14T20:53:00.001-05:00

Yay....we all finally got to go to a Royals game a few weeks ago! It was an afternoon game, so it started when Kylie was supposed to be going down for her nap....I know, what were we thinking!

I don't know who was more excited, Matt or Kylie :) Just look at the big smiles on each of their faces! She was trying to hide it, but those cheeks and eyes just give her away!

Umm...now what?

Cheesy self taken family photo...silly, but I like :)

Goldfish just made this outing even more exciting!

Love this one...they are both intent on something and are making the same motions. It is too cute!

It was time for the singing on the national anthem, so we told Kylie we had to stand and put our hands over our hearts. She wasn't sure why everyone was following suit, but she knew enough that it was the right thing to do. There is something about seeing a little child behaving so well and with that sweet innocence in their eyes. Just priceless.

Wait...where did my heart go? It must be down by my belly now...because right now I can go for some stadium food in my tummy.

And there she goes...Chicken Fingers and Fries....so yummy!

Kylie had a time period when she just wanted to sit on the stairs that lead up and down the levels for people getting to their seats.

They also have an area at the stadium for kids to play...just perfect! We pretty much stuck to the playground area and the little fountains. Kylie had lots of fun and did a great job!

There was a little tunnel like thing for the kids to crawl through on the playground area, and it has little holes cut out in it. While Kylie did a super job of letting a little kid take his time crawling through it...I got her to peak out a bit so I could take a pic of her....it's so cute!

I'm not totally sure how I snagged this shot, but it looks like she is just flipping her hair as she was walking about all sophisticated.

Peaking over the rail at the field while we walked about.

We went in the souvenir shop to find out about getting signed up for the Blue Crew (like a little Royals club for kids) and Kylie found the giant foam finger. She instantly put it on her hand and started running around with it. Looks like she is directing traffic or something here. Love the little pose she has going too!

Below is some video of Kylie cheering for the Royals (Go Royals, Let's Do This Royals!), dancing, and playing in the little fountains.

Make a video - it's fun, easy and free!
www.onetruemedia.com

With Kylie's social anxieties and sensory issues, we always wonder how she will respond when we go out and do things and are around other people. To our surprise, she did amazing while we waited in line to run the bases......every Sunday home game, you can line up around the 8th inning or so, to walk around the field and then run the bases...kids and adults!

Anyhow, we just started chatting with the people in line around us and her cuteness factor became quite magnetic. Before we knew it, she was playing hide and seek with some older girls around us, and tickling many around us with a cattail that she pulled from a nearby plant. We just kept saying how amazed we were by how awesome she was doing! We even shared our excitement with those around us....they thought she was pretty great and awful cute too!

In addition to Kylie amazing us with her play and social skills, we met some really great people while we waited to get onto the field. There were a group of guys that Matt chatted with quite a bit, and they did great interacting with Kylie! Matt shared some of what we went through with Kylie, so seeing how awesome she was doing astounded them too :) It was great to see how receptive they were when Matt was telling them about the crazy stuff...some good guys there for sure!

Kylie tickling one of the people around us.

Just getting on the field!

Isn't this cute?! Daddy and his little girl on the Royals field!

Touching the soil on the field

Some video of Kylie running to second base and then to home plate!

Make a video - it's fun, easy and free!
www.onetruemedia.com

So going to a Royals game during naptime, staying the entire game, and running the bases makes for one tired little girl.

End of Summer Celebration

2011-09-08T21:02:00.000-05:00

Okay, so I realized that I had not done a post about her last day of school for the Summer session at the Britain Center. I was waiting to get some things to add to it, and well...I just need to do the post :)

I was crossing my fingers that I could stay on the last day and help out, but her teachers and I know that she does so much better when we are not around :( I remember when I showed up early to pick her up on her first day of school there and she got pretty hyper and then basically stopped participating when she saw me.

Oh well, one day she will be less anxious and will show off all of the wonderful things she is learning at her school! The fun part is that in just a couple of weeks, it will be Kylie's special day, where she gets to be the line leader and bring a special treat. Oh, and I get to stay and help out...yay! I'm excited to see how things go with me there and what her day at school is like.

Ok, so onto the last day of classes for the Summer. They had a super fun day and got to go swimming, and had ice cream cake. I made a giant cookie cake with balloons on it too. It was so cute to hear Kylie say "my momma made it."

Below is a montage of sorts with some pics and video. They did a couple of songs...Skidamarink a Dinky Dink and The Lion Sleeps Tonight. Kylie wanted nothing to do with performing. Like I said, she does not like to do things when we are watching, and especially not when there is a room full of parents taking pictures and video. It was kinda sad to see her with her head down or just sitting in her chair instead of joining in....poor thing look so very unhappy.

No worries, her music teacher (also a music therapist) is simply amazing (everyone there is!) and got her to dance just a bit...most importantly, she got her to smile!

I can not stress enough how happy I am that Kylie is at the Britain Center with the best people possible for her and us!

Make a video - it's fun, easy and free!
www.onetruemedia.com

Drum roll please....

2011-09-06T20:54:00.003-05:00

Monica is the winner of 3 Reversible Headbands!

Thanks to all who donated to Team Kylie for her school's scholarship fundraiser! It is thanks to the scholarship fund that Kylie is afforded the opportunity to be at such an amazing school, where the most incredible educators and therapists can help her stretch enough out of her comfort zone and continue to amaze us all the time!

Random moments with constant cuteness

2011-08-28T16:04:00.000-05:00

Yay..this will be the final post to get me caught up through July! Too bad August is about to end in just a couple days.

Our neighbors had gotten Kylie some super cute sparkly sandals and a cute Tinkerbell nightgown. We usually watch their cat when they go out of town, so they love to get things for Kylie as a way to say thank you! Kylie gets to play with their cat, and get some cute things, so she is loving it for sure.

Kylie just had to wear the jammies to bed the day we got them. I wanted to send the neighbors a pic of her Tinkerbell cuteness, so I asked Kylie to smile for me and this is what I got...

This is just one of many times that we played outside in the sprinkler, pool, and/or slip 'n slide.

What a cute smile!

Another neighbor of ours had their niece over one weekend to visit. We went to over and said hello, and then the little girl came over to play with Kylie for a bit. She was absolutely a doll! She is older than Kylie...I thought what a great little peer model for her to have :) It was simply adorable watching them play together.

Aren't they so sweet!

Towards the end of July, I was asked to make a giant cookie cake for a friend of ours daughter for her birthday. I called to tell the mom that it was complete and that I wanted to deliver it. She said to just bring it to the party, and that the girls wanted Kylie to come to the party too.

Kylie must have been sending them messages or something, because that whole morning she was saying she was going to the party, & I was trying to tell her that we were just dropping off the cookie cake.

It was so great that we got to go, because Kylie had a chance to interact more with the girls...they are from our life group at our church. She had so much fun & it was cute to see all the girls surround her, because they wanted to play with her...that cuteness of hers is like a magnet!

Below are a couple pics of her enjoying herself at the pool party.

Kylie and I playing in her playroom, and using the timer function on the camera...cheese!

Kylie always wants to help cook or bake in the kitchen...usually bake...I don't care too much for cooking :) And she never lets me forget to put an apron on her before we get started...she has 2, and usually picks a different one each time.

She is mashing up some bananas for our banana muffins.

One morning the sun was shining pretty bright in the playroom, so Kylie decided to put on her sunglasses. I thought it was so cute seeing her wear them, especially because she was still in her jammies. She just looks a little too cool in these pics.

On another playtime morning with jammies still on, Kylie brought down one of her purses filled with some bracelets. It was apparently time to take them out and put them all on.

I think little girls playing dress up is so cute...now I am just waiting til she insists on wearing all the jewelry and girly things out and about.

Wedding weekend, and Zoo fun

2011-08-27T22:59:00.002-05:00

Still trying to play a bit of catch-up from July...just one more post after this, and I should be caught up :)

One of Matt's long time friend's got married mid July. The wedding took place in St. Louis just about 4 hrs or so away from here. We made the drive there, and Kylie did amazing on the way there! I'm certain she did better than me :) I have no idea how a child can watch the same movies over and over again...it drives me nutso!

The groom's family has always been so gracious to us, so it was good to see them on such a special day for their family. The church was absolutely beautiful...the groom's parents were married in the same church 31 yrs ago! Unfortunately, I have no pictures of the ceremony...my battery died before the ceremony started..ughh!

I didn't even bring my charger for my little camera, but I did have a second camera back at our hotel. Would you believe that after snapping just 2 pics(blurry ones at that) at the reception that the battery died on that one too! We had the charger for this camera, but of course it was in the hotel :(

Here are a few pics I got of Kylie just before we left to go to the wedding & then of each of us with Kylie. I think she looks absolutely beautiful! Best part is her dress was free. I made it...I just took in one of my old tops, and used the scraps to make the flowers on her dress and headband.

After some fun on Picnik, I came up with these pics of Kylie:

A sweet pic of Kylie and Matt! Love this pic!

I swapped places with Matt and he got a pic of Kylie and I...so love this picture of her and I!

We really wish we would have packed the battery to my little camera, because it also shoots video. You would have all been smiling and laughing away at how much fun Kylie had on the dance floor at the wedding. There was a time where she was in the center of the dance floor having the time of her life, while everyone was dancing all around her!

We could not get her off of the dance floor for anything...not even for wedding cake! We tried to join her on the floor and she just got mad and would just dance away from us. I was like oh no...she is only 2 and already embarassed to be seen dancing with her parents..lol

It was a great time for all of us, and we were so pleased to have been invited to share in their special day.

ZOO TIME

The next morning, we wanted to meet up with Sophie and her family. Matt really wanted to go to the St. Louis Zoo despite the incredibly hot and humid weather they were predicting. Elaine and Brandon are so kind, that they agreed to meet us there with the kids, so we could cath up and have a good time with the kids.

Since we had the charger to the 2nd camera, I charged it when we got home from the reception, so it would be ready for the zoo.

It was so hot, and we all just kept trekking on in the heat...and searching for the air conditioned exhibits :) Whenever it was super hot...which was like the entire time :) and Matt would complain...I just reminded him that he wanted to do this. Though the weather conditions were not the best, it was wonderful to see them!

Once we left the first exhibit, Sophie grabbed my hand and just kept on talking to me. My heart just began to melt....she is so incredibly sweet, and it made me feel honored that she wanted to hold my hand. Maybe she will do this with most friendly people that are around her and her family, but it just means something so much different for me.

This is a little girl that shared a lot of the same beginnings of the crazy IS stuff that Kylie did and then so so much more. To have seen her last year and now to be seeing how truly AMAZING she is doing and how far she came just left me a bit speechless. To hold hands with this little girl, who is getting so big! was just like holding the hand of a new little girl...she is such an inspiration to know and be around.

Kylie and Sophie looking for the zebras that Kylie wanted to see

This was one of the indoor exhibits...yay for A/C! Kylie had taken her sunglasses off and Sophie was being silly and put them on. They both thought it was pretty funny!

This is pretty cute...the girls were having some sort of discussion either about the birds in the exhibit or where to go next. I just think it is so cute to watch little ones have conversations together.

Super cold exhibit on the way...Penguins. It wasn't just cold in there, it was freezing cold! Poor Kylie was actually shivering the whole time. It was worth it, the Penguins are so cute!

Trying to keep warm with dadda

Posing with a penguin! Okay, it was not a real penguin, but it's still cute.

Love this pic...all the kids lined up trying to see what in the water

It was incredibly hot, so we did not stay at the zoo much longer and I can not thank Elaine and Brandon enough for enduring the heat with us at the zoo. The kids did great, but I think it was taking its toll on all of us. Sophie came over to say goodbye to Kylie, and she gave her a hug and kiss. She is just the sweetest girl! Kylie was a bit uncomfortable about giving hugs at the time, but she did great when Sophie hugged her goodbye.

All and all, our trip to St. Louis was a great time...witnesses a couple's special day, shared and exchanged the great achievements of a child.

1 more week to Donate...& a giveaway too!

2011-08-24T22:23:00.006-05:00

You may or may not have seen the blogpost I did here. Well, Kylie's school is having a campaign to raise money for their scholarship program. Kylie is a recipient of this program, making it possible for her to attend their toddler classes (preschool-ish) and receive OT for her sensory issues.

There is only 1 week left to donate (ends Aug 31st), and the school has currently reached 98% of it's goal. Wouldn't you love to know that you helped them reach their goal or even exceed it?! Any contribution you make will help Kylie and other children receive the necessary therapies and classes to help them in areas of need.

For every $10 you donate, you will be entered into a raffle to receive some reversible headbands that I have started making. Once the winner is selected, they can choose 3 headbands that will be sent directly to them.

So how do you donate? Just click here, and it will take you to Kylie's page.

What do these headbands look like?

*Note that Kylie is wearing one of them up above too :)

4th of July..Kansas

2011-08-24T21:43:00.002-05:00

I was about to do a blog post from last weekend, and then I said nope...I really need to get caught up from this summer. Just a couple days after we returned from Ohio, we attended our local city's 4th of July parade.

I took a million pics...what's new :) Some may look the same, but they are not...she is just so darn cute, that I had to take another pic, and post 'em all!

Oh, I made her dress and headband...here is a pic of a close up on one of the stars on the dress. It was my first time doing applique, and it wasn't too bad!

Relaxing in her chair, while waiting for the parade to start.

Something made her laugh...doesn't matter what it was, just love seeing that face!

Chatting with some folks that were sitting near us.

Something caught her eye, and she was pointing it out to us.

Love this pic!

She is just so darn cute!

My favorite clown...the hobo

I just melt when I see how beautiful she is!

I don't recall what was going by, but evidently she did not like it.

Still not sure about whatever it was....

...okay, definitely not liking it.

All and all, she loved the parade...not too crazy about the firetrucks, but who is. They are so loud. One thing I can say for sure is that the parade from McDonald, Ohio gave out wayyyyy more candy than ours did in Kansas. With that said, we are going to be in it next year and give out tons!

Hold Me

2011-08-20T21:52:00.005-05:00

I have been having one of those whoa is me kinda days...weeks, err...years. I know at times when things seem so tough, that those of you who are like me...have a tendency to feel like things just keep piling on and there is no way out.

I know things could be worse...much, much worse. They are not, and for that I am truly grateful. I really am. I just get down in the dumps sometimes...every couple of months or so...honestly, I don't know how often. I could always ask the hubby, but I'm kinda scared at what his answer might be :)

Anyhow, I have been feeling particularly blah today and as if I haven't a clue on what I should be doing with Kylie. It feels like she has been extra whiny, screamy, and not so how I wish she would be behaving and working with me. Most can tell you I am not the most patient, but I try so very hard when it is just Kylie and I...which is like a lot of the time. Hubby has to work hard to bring home the bacon.

I have been struggling with trying to work with these sensory issues. The hard part is things can be just fine one day with a certain activity or routine, and then be absolutely nuts the next time you try it. I am told that is what makes them sensory issues...boo to them. Trying to filter out the possible upset in the whole scene is often difficult, and even impossible to pinpoint. So adding that on top of her anxiety and the fact that she is only 2 can make for a weary mommy.

I think I went past my quota with the amount of patience I have/had. By the time I got Kylie dressed today, which was still morning time...I was done. I told Matt that he and Kylie could go out and I was staying home. I was already buried in my bed when Kylie ran up to give me a hug and kiss before they left. After the hug and kiss she said, "what I do next?" She knew she was supposed to say or do something else. After a slight pause of silence she said, "I love you momma."

Yep, just when I was already feeling like a crappy momma for not feeling like I could do much more with this little girl, she lets me know she loves me. Granted, Matt had something to do with it...she said it and it made me feel just a bit more pathetic.

So there I was, at home by myself with a face full of tears. I got myself together by the time they got back, but the mommy guilt has been weighing on me all day.

After looking through some recent pics I have taken of Kylie, I have been able to reflect on some of the wonderful growth she has made.

A couple weeks ago we attended the baptism service that our church held at our local park. The baptism was taking place on the beach area. I was figuring one of us would be holding Kylie the entire time, or we would be back and away from the sand.

Kylie has never liked the sand...never really even tried to experience it, as the sight of it is usually enough to upset her. Once we arrived...we realized we were late, as they were already in the middle of a prayer. I was a bit worried Kylie might yell or scream when we began to walk on the sandy beach, but she didn't!

Nope, she just wanted her shoes off. AMAZING!

Amazing that not only was she wanting to walk on the sand barefoot, but she chose...He chose for it to be the day that we were gathered with members from our church during a very special service.

It was so beautiful, that instead of me taking pictures of those being baptized....I took pictures of Kylie's first willing experience with sand...between her toes, and sifting through her hands.

Looking at these pics makes me weepy, but this time it is the happy kind! I am so grateful that He shows me His love and greatness through Kylie.

This just makes me think of a song that I absolutely love right now....Kylie loves it too! Whenever it comes on she tells me to turn it up :) Here is a link to Hold Me, by Jamie Grace.

After you click to play the song, go back through and look at the pics again...makes you smile even more :)

Capturing Life's Precious Moments...by Justina Hafely Photography

2011-08-16T21:44:00.001-05:00

While we were in Ohio, we had some beautiful pictures taken of Kylie. A friend of mine from way back when had just recently started her own photography business, and she did a great job capturing some sweet moments of Kylie.

I thought of doing a slideshow of all of the pictures, but then I thought you could enjoy the beauty of them more one by one. Enjoy!

*Click on the logo to link to Justina Hafely Photography's site.

Getting Funky!

2011-08-15T22:51:00.000-05:00

I have mentioned in past posts about us going to Funky Mama concerts. Kylie loves the music, and Funky Mama is so incredible, fun, and sweet, that we try to go to her concerts whenever we are available. We have chatted with Funky Mama a few times and she knows us now, so she always asks how Kylie is doing and is just so sweet!

I had gotten a bit off track from following Funky Mama, but our friend Bobbie let me know she was having an upcoming concert out at Park Place, so we added it to our MUST DO list last week.

As luck would have it, I forgot my camera, but Bobbie had hers and took some great pics and sent them to me...yay for Bobbie!

Here is a pic of the whole crew that we sat with to enjoy the show:

Just on the edge of her seat/blanket waiting for Funky Mama to start!

It is so incredibly cute to watch little kids dance around...even cuter when it's Kylie and Dylan!

During a brief intermission, the kids thought it would be fun to check out the fountains. Like how I named them in the pic below :)

Funky Mama has this super fun song "Pop n Hop" it is about popcorn and the kids get down low and she tells them to feel the ground because it is hot, and when she yells POP, they all jump up like they are popcorn popping. Anyhow, Funky Mama was singing a new song and asked the kids to get down low...Kylie immediately thought of the popcorn song, so she was about to blow on her hands in the pic below after checking for the hot ground...cuteness!

This is my all time favorite pic that Bobbie sent us...just look to see why :)

Matt took some cell phone video of Kylie dancing and it is pretty darn cute too! Below are 2 videos mushed together...the first one is up close, as Kylie was dancing right next to us, and the next one is when Kylie went to dance up front with the other kids...woohoo Kylie! Just look for the little girl in the yellow top and you will see her bouncing all around.

Make a video - it's fun, easy and free!
www.onetruemedia.com

So why is all this so blog worthy? Well because it is Kylie and everything she does is cute and amazing!

Mostly because in the past she would be so excited to go see Funky Mama perform, but her sensory issues and anxiety would take over and she would just sit there and be very much stressed out. If we ever tried to encourage her to dance she would scream and get so upset.

This time was different, and it was so great for us to see how happy Kylie was when she got comfortable and started dancing...she even wandered up front with the other kids and danced all over. Yes, it made me cry...more than once :) I was so proud of her!

It totally helped that a couple little girls were dressed up as princesses, so she said she wanted to go see princesses and that meant she had to go up around the other kids and find them. Hey, whatever it takes is okay for us...to see her smile and have such a great time with something that used to make her so uncomfortable was great for us to see!

Way to go Kylie!

Thanks to Funky Mama for sharing your music with us and watching Kylie grow and be Funky!

Get on Board with Team Kylie!

2011-08-09T16:22:00.000-05:00

Hey all, for those of you that have been following the blog for some time now, you have come to know that Kylie has recently enrolled at the Lee Ann Britain Infant Development Center.

*This pic was taken on the last day of class at the Britain Center for their end of Summer Celebration

The Lee Ann Britain Center is currently raising money for their scholarship program. I want you to know that if it were not for the scholarship program, Kylie would not be there. It is through this program that Kylie is able to receive OT for her sensory issues, as well as be enrolled in their toddler class. This is where she can utilized the skills that she learns in OT, and it gives her the opportunity to interact with peers and further develop her social skills and overcome her anxieties.

WOW...all of that in one place! I know, it sure is amazing!

So will you help? Will you donate to the Britain Center on behalf of Kylie?

If this sounds like something you would like to do...click here to link to Kylie's page.

Rain drops...and tear drops

2011-08-06T22:58:00.001-05:00

Okay, so I am pretty tired and was planning to go to bed, but I just keep thinking about today. We had a garage sale with our neighbors today and it started to rain a bit....of course, right? Anyhow, our neighbor (Jessica) started singing the Rain Drop song:

What if all the rain drops
were lemon drops and gum drops
Oh what a rain that would be....

Anyhow, Kylie looked at me and said "Where I hear that?" I told her that Miss Shannon (her OT) sang it to her at therapy this past week. Kylie is one to always try to link things together...I swear she has this giant puzzle in her little head of all the things she knows and where they all fit :)

*I took this pic just before dinner this evening

After we all rested and showered up, we went over to our neighbors for dinner and to celebrate our successful garage sale. Jessica started singing the song again...Kylie loves it and even began requesting it. Well, the next part of the song goes something like:

We all stand outside
with our mouths open wide
Going ahh ahh aah ahh ahh ahh ahh ahh ahh ahh

Well...Kylie doesn't like doing silly things like that or anything where someone might watch her...it makes her pretty well stressed or overly giddy. But she really wanted to do it, and having any sort of audience is tough for her, especially when she wants to try something or we are trying to get her to try something for the first time.

So she ran in their sunroom and said, "I do it in here so momma and dadda can't see me." This is where the tear drop part of the blog post title comes in.

I was so proud of her for trying it...for being smart enough to find a comfortable place to singing, and I felt sad that it is hard for her to do....so yeah, I started to cry.

It was mainly coupled with the fact that we have been seeing lots of crazy head stuff in the past couple of days, so it makes for a weepy momma and a stomach twisted dadda (though he would never tell you).

We know that her head going way back doesn't hurt her, but it scares us and makes us worry. Worry that she may lose her balance and fall, and just plain old worry about her.

I guess one of my biggest things about it all, is that it stops us from enjoying watching Kylie laugh and get all excited, because when we see her head go back so far...it just makes us feel sick and worry, and I don't like that these head things are getting in the way of us watching our child be joyful.

I don't know if it was before or after my tears, but I tried to get some video of the singing. Sorry, the footage isn't the greatest, but it is cute too!

*You may need to turn your volume up a bit

Make video montages at www.OneTrueMedia.com

Retail Therapy

2011-08-01T21:55:00.001-05:00

I have a few posts that I need to do, but was so excited about my latest project for Kylie, that I wanted to share it ASAP!

So some time ago, when we were with ITSJC (before they kicked Kylie out...sounds harsh, but that's how it felt), they had started us on this Stickids program. I remember thinking how great it all sounded, but it was kind of hard to implement. Not because it is difficult to work with, but because you really need to figure out all things sensory to know what to do and when to do them.

I remember when we got our sheets from ITSJC, it was like 5 pages worth of these little cards of activities...it was overwhelming to say the least. I felt hopeful because our OT at the time was going to set us up with a calendar of sorts and plug the activities in to help me see what to do and when to do things.....unfortunately that never came. Not just because Kylie's services were discontinued, but because there wasn't much follow through with the OT.

No worries, because our new OT at the Lee Ann Britain Infant Development Center is so AWESOME and is working on all of these things with us. So much so, that I feel like I can really know when to do which type of activity with Kylie....yay for progress for mommy!

So the good thing about having all the old sheets of activities was that I could use them to create this wonderful game for Kylie, without it seeming all too therapy like for me and Kylie....I have a hard time when I see these things as therapy, because I want to Kylie to have no bumps in the road with her learning and development, and when I see them in black and white, it makes me weepy.

So onto some clarity regarding the title of this post. Okay, so right now I have the little cards from the Stickids sensory processing program in these little envelopes that I picked up at Joanns. I labeled them for the different categories (Motion, Heavy Work, Retreat, etc.), but the problem is you can't really shuffle the cards around inside of them, so Kylie ends up picking the same activity over and over again.

Here is a pic of our current system:

As you can see, the envelopes are flat and the cards tend to just all lay on top of one another, and well...you get the point.

So are you ready for my creation?

I'm sure at this point you are trying so hard to figure out what Retail Therapy has to do with OT and sensory, and all things considered.

Okay so here goes:

Click on the pic to enlarge...way cuter when you can see them more clearly!

Isn't it the cutest thing ever :) I am just so proud that I thought of this all by myself, and best of all.... I created it. I often find things online and just recreate them...like a lot of my sewing projects where I just use someone else's pattern.

So the tops of the purses are open to put all of the cards into them. Plenty of room to shuffle around in there. There are 6 categories in the Stickids program, which is why I made 6 purses. We often only use 3 or 4 categories, so we can always use the extra purses to put in the cards that we used...to minimize any chances of repeating an activity.

Here is a pic of the cards we use....these particular ones are on a key ring that Kylie's new OT put together for me...so I can keep them in my purse for when we are not at home.

I just thought that since Kylie loves to play dress up and carry around a purse, that this was the perfect way to make things even more fun for her...and me :) She already loves playing the "card game" that is what we call it right now, but I'm sure she will enjoy it even more when she sees that she can pick the cards out of the purses.

So how in the world did I make this board of purses?

*First off, get a board of some sort and cover it with fabric....I used a cork board.

*Then make your little purses...I thought of using felt, but I felt like the options would have been limited and I would of had to do more crafty things to make them cute. I used some of my fabric scraps, and I used some fusible stabilizer to make them more sturdy.

-Note the internet is your friend...so use it to find different styles of purses, so you can create a variety.

*Then I got some velcro to attach them to the board...that way they can be removed or rearranged.

I still may get some jewelry and have Kylie help me decorate the board to make it more fun and a bit more girly :)

Feel free to let me know your thoughts and which purse is your favorite. I personally love the tote bag!

Ohio....and the beat goes on

2011-07-28T22:01:00.001-05:00

So I too over 400 pics while we were in Ohio, which totally explains why I am still posting about our trip :)

Now, I don't know how well this pic shows it, but I had fallen asleep on the couch or something, and my mom found Kylie in the master bath putting on some lotion. It wasn't just lotion, it was some lotion that kind of shimmers. She had put it on her face, so she was a bit sparkly on her cheeks.

My sister had come over to visit with Kylie, and I was able to capture some cute pics of them playing together.

Aunt Jen trying to get Kylie...Kylie is getting ready to take off, and already giggling!

Looks like Aunt Jen got Kylie!

I did some editing with this one, and I love it!

I don't know where Kylie found them, but she had a bag of chalk and was ready to decorate Grandma Karen and Papa Joe's driveway.

Kylie got Uncle Joey to help :)

Isn't this so cute?!

Uncle Joey getting Kylie...love her smile!

Racing Uncle Joey...they did this time and time again...really cute!

Uh oh....looks like Uncle Joey and Kylie have a case of the giggles :)

While we were in Ohio we were able to see the annual 4th of July parade in McDonald and go to the festival too. We actually planned our visit, so that we would be there when this was all going on. Kylie's follow-up with Dr. Ghosh was supposed to be the end of July, and we changed it. I really wanted Kylie to experience the things I looked forward to when I was growing up.

Kylie and Matt waiting for the parade to begin.

While waiting for the parade to start, Kylie noticed her shadow and was making a moose :)

Checking to see what is going on down the street

The parade was just beginning...Kylie was thinking it was too loud.

McDonld High School Marching Band

Some clowns...every parade just has to have them!

Kylie running to get some candy...she ended up with enough to last her 'til next Halloween!

Girl Scout troops!

I don't remember what she was saying...she sure is cute though!

Matt was so excited to see this baseball team...they were called the Royals...just like here in KC!

This is a note to all parade attendees....watch out for the little guys on the baseball teams that are in the parade, they will pelt you with the candy. Something that has been like that since I was a kid...Matt was shocked and laughing all at once.

Like every little festival, there are games to play and rides to go on. As we walked by one game, Kylie had her first meltdown over not getting her way. She sooooooo wanted to play this fishing game (go figure) and we told her we had to get tickets....come to find out we didn't need to get tickets, but anyway she got to play with her daddy and loved it!

Kylie and Matt as they were about to get off the Berry go Round.

On our last night in town, we went to play putt putt with my parents. Kylie had fun, but I think she also enjoyed running away repeatedly and having us chase her. Her Grandma Nancy would be proud of her playing, because she loves to golf!

Papa Joe taking a swing

Grandma Karen taking a wack at it

Kylie beat us all...whenever Papa Joe asked what her score was on each hole she said 2!

Super cute...Kylie and Papa Joe playing on the practice green.

Kylie cheering that she won!

Right across from the Putt Putt was an ice cream stand...super convenient. Kylie was checking to see where she measured up. Ding Ding....free cone for Kylie!

The girl asked if Kylie wanted a face on it, and we didn't know what to expect...look how cute!

I think Kylie's got a pretty cute face here to go along with the one on her cone :)

After eating her ice cream cone, Matt thought it was the perfect time to teach Kylie how to catch lightning bugs. I can say it was so sweet watching them together running around to catch some lightning bugs and then hear her squeal in delight when she got one.

I am amazed that she was okay with having them in her hands....as noted above, Matt did this with her not me....no thanks :)

Here is some video I got of them...sorry it was kinda dark, so it's a bit grainy.

Make an on-line slide show at www.OneTrueMedia.com

Ohio....Outdoor fun, and picture party

2011-07-26T13:44:00.000-05:00

So after some naps following Kylie's neuro apptmt...it was time for some fun outside. My parents have a giant back yard, and Kylie loves to run around it. Just look how far back her and Matt were from the porch....this was with my camera zoomed in as far as it would go.

Kylie and Matt racing back to the house...Kylie with a giant flower in hand.

She LOVES to smell all flowers!

She is off to run some more....LOVE, LOVE this pic!

Playing on a little bridge in my parents yard.

Getting all wet in the well/fountain they've got out front.

Reading some books with Dadda....I love seeing them together like this!

The following morning, we decided it was time to do some swimming. We put the ball pit inside of an inflatable pool and filled it up with water...Kylie absolutely loved it!

She loves the Elmo bathing suit Grandma Karen got her!

A little wet footprint

Sharing some giggles with Papa Joe

Okay, so I was having tons of fun on Picnik, doing some editing the pics I had taken of Kylie running around the yard. Some of the pics are repeats from the beginning of the post, but others are not...love them all!

Matt was with me, and told Kylie to put her hands on her hips...she decided to strike a pose of her own

Here we go...hands on the hips now :)

Kylie and her Dadda

My all time favorite...

Ohio Part 2....Bath fun and Neuro Visit

2011-07-21T22:13:00.007-05:00

My mom had bought Kylie a ball pit, so we decided to take all the balls out for Kylie to play with them. It was not too much later before bath time rolled around, and Kylie had some ideas of what to do with all the balls...100 of them at that!

Matt was getting the water started while Kylie loaded up a purse with some balls, and then dumped them in the tub. Matt said no more, and told Kylie to get ready to get in the tub.

The next thing we see is Kylie coming back with an empty purse, full of giggles, and loading it up again to dump it in the tub. She contd to do this until she got all of them....I have no idea why I didn't get some video of this....I was too busy watching her giggle like crazy and loving every moment of it!

Below is a video montage with some pics of Kylie in the tub, and a little bit of video too. Enjoy!

On to the apptmt. I wanted to be sure to get some pics of Kylie by the fish tank and a couple others to compare to pics from previous visits. Click here for last years visit.

She just looks like such a big girl here!

Family pic with Dr. Ghosh

(We had just given Kylie a sucker for doing so well. I think that is all it took for her to allow the doctor to hold her for the pic...why didn't we think of this sooner)

After the apptmt, we went to find the tree that they have projected on a wall downstairs in the building adjacent to ours. I love this tree, I think it is really neat, and just kind of beautiful to watch the image dance on the wall. Below is a video of Papa Joe helping Kylie climb the tree, and then of Kylie and Matt racing in the tunnel that leads to the parking garge. So cute!

Photo and video editing at www.OneTrueMedia.com

Needing to do one more checkup with the help of her doctor bag as we were leaving.

Dr. Daddy checking Kylie's heart...yep, it's full of love!

Touching the water display out front...just like last year :)

We found some Monsters Inc. friends at a stop on our way home.

Sleepy Kylie

I decided to let you all enjoy the pics and video, while I keep you in suspense about how her apptmt went :)

Okay, so we had my dad come with us so he could see where he had to go to take my mom up to the Cleveland Clinic a couple days after Kylie's apptmt. Also, I wanted him to meet Kylie's doctor and see what doctor visits are often like for Kylie and us.

Well, I think Papa Joe was a good luck charm, because Kylie did absolutely AMAZING! She usually starts crying the moment they call her name, and it's just a meltdown from there on. Kylie was such a big girl and stood on the scale and up againt the wall to get her height. I know this may not be anything big to most, but this was a HUGE step for Kylie. She was AWESOME!

She did extremely well all throughout the apptmt...she had tears welled up in her eyes, but she held it in and never let the tears spill over. Not even when the doctor took her head measurement and did the physical exam. She is really growing up!

The doctor was very pleased with how well she was doing, and all the growth she has made socially. He still thought she was shy, but that could just be Kylie and nothing more than that.

So what were his recommendations?

NONE

Yep, he said he has no recommendations and told us to keep doing what we are doing!

Below is literature from his official report:

In summary, Kylie is a 30 month old girl with history of infantile spasm, treated with ACTH with no further recurrence of any form of seizure, so far. She developed features suggestive of milder form of autistic spectrum disorder, now improving in all parameters on appropriate intervention with behavioral training, speeh therapy. Speech is normal now. Stereotypies improving. I suggest continuing same management, prognosis seems good.

Hooray! We kind of figured he would be pleased with her progress, but we had no idea he would say "No recommendations." It was later that night when I realized that we were so elated with his comments that we never asked him any questions....oops!

So I emailed that evening. I asked the question that is hard for any parent to ask and more so for a doctor to answer, but I just had to...here goes:

Based on both the cases you have seen throughout your profession and with our visit today, do you feel Kylie will lead a typical life, or may have some issues down the road? I understand so much of this is a wait and see type of thing, but I worry about her, and any extra information or perspective you can give me will help me out.

His response:

No one can guarantee but it seems that Kylie will lead reasonably good quality of life if no new problems crop up and if appropriate behavioral/educational measures are taken.

Isn't it funny how their responses are so much shorter than our questions? Anyhow, I was so excited with all of this. And Matt was too....so much so that when we woke up he turned to me and said "Do you want another one?" WOOHOO, it is about time!

So who knows, maybe sometime next year we will see about Kylie becoming a big sister :)

Ohio...Part 1

2011-07-19T16:52:00.001-05:00

We went to Ohio the end of June for Kylie's follow-up with her neuro at the Cleveland Clinic. We were planning to drive there on a Friday, but Kylie and ended up flying out on a Tuesday, while Matt headed out Thursday night. My mom had a heart attack the beginning of May and was also scheduled to go to the Cleveland Clinic for a consult....our early departure was so we could spend some extra time with Grandma Karen.

Here is a super cute pic of Kylie and Grandma Karen resting together on the couch. Kylie is not one to cuddle or lay down unless she is in her bed to sleep, so I knew I had to snap a pic before the moment was over.

My mom had lots of fun shopping for Kylie this Spring, and had so many clothes for Kylie when we got there. Here is a pic of Kylie in her cute ballerina jammies. She looked so cute in them! She even did her ballerina dance for us :)

Kylie and I went to the store with my dad one morning, and she did really great with letting him get her out of her carseat, and it was so sweet when I looked up and saw her holding his hand as we were walking in the store...of course I snapped a pic of it....and then did some editing and came up with this:

I'm not sure if Kylie will be much of a girly girl or not...she loves climbing and running around, but also loves to wear dresses and pretty shoes. Anyhow, she started letting me paint her nails. Okay, so I had to bribe her to do it the first time...one jelly bean per finger. Don't worry, she only had a few before I was able to get away with having to give her one every time.

My mom has like every color of nail polish you could think of, so Kylie was definitely enjoying that. She kept saying "pick a color" so she could pick out a new color or nail polish....she seriously wanted a new color every day. Below is a pic of my mom doing her nails.

Since I have been gone from Ohio so long (almost 12 years...holy cow), I don't remember where to go when we are there or how to get anywhere. An old friend for high school told me about this indoor play place called Skedaddles so we decided to check it out. Once, again, my sense of direction is not so great, so since we got there a little later than planned, we were not able to do the craft activity they had going on, but were still able to play.

My sister met us there, so we all got to spend some time playing with Kylie. I think Kylie had a good time playing, it is definitely a cute place for kids to play.

Here is Kylie playing inside a little house they had...she loves things like this!

Weee...going down a slide!

I thought this was super cute. It has a bunch of these little bike type of things, so a few kids can play on it at the same time, and when they pedal it makes it move and they go around in a circle. I seriously think this is what helped Kylie learn to ride her bike. She has been able to go backwards, but once we got back to Kansas, she was going forwards!

Whenever we go to Ohio we always get some yummy food! I think it was the first night Matt was there, we went out to dinner and then stopped at Handel's for some ice cream. You seriously have to go here if you are in the area, because it is sooooo good! I sampled the twixter flavor, which was cookies and caramel...totally tasted like a Twix candy bar. I still got my standby favorite...mint chocolate chip.

Kylie saw the Dora popsicle and had to have it. Here is a pic of her all ready to eat that yummy treat! Doesn't she look cute in that dress...courtesy of her Aunt Jen :)

I swear Kylie eats more food on the drive home whenever we eat out somewhere, than she does in the restaurant. So after eating our ice cream at Handel's, Kylie asked for her food. Here she is eating a giant onion ring...I have no idea why, but she loves onion rings! She also likes to say they are "worms"...I guess they kinda look like them when the breading is off of them, and then she laughs and says she is eating worms....so gross.

We also had a chance to meet up with an old friend of mine that I have been friends with since as long as I can remember...you know, the kind that you played in puddles with in the summer after it rains.

Well, Karen invited us to come to a wine tasting...and yes, we took Kylie :) They are totally family friendly and welcomed kiddos, so it was great. We had a bit of a time navigating our way to the location...got stuck in a parade, and some GPS issues that said roads were there that didn't exist, but we made it there!

The owner of The Cortland Wine Cellar, Sheila, had brought Kylie some paper and crayons, and a tic tac toe board to play with before it was time for the dinner they were having....see kid friendly :) She later brought Kylie some grape juice and a miniature little glass to drink it out of...it was so cute & she did great drinking out of it. Of course we had to take pics, because if you didn't know any better, you would think she was drinking some wine.

They had a live band playing the night we were there, so here is a little video I shot of Matt and Kylie dancing and being silly...I think they were doing "The Twist."

Make video montages at www.OneTrueMedia.com

My friend, Karen, and Kylie playing outside. Kylie was making a silly face, but I thought Karen looked so pretty.

A pic of the 3 girls....yep, a bit of fun editing too...I thought it came out pretty cute!

Karen's boyfriend is a videographer and he and his co-worker were doing a story on The Cortland Wine Cellar the evening we were there, so please check out the footage they got that evening. Oh yeah, Kylie has a cameo appearance about 2:11 or so in the

Once we got home that evening, we noticed that Matt, my dad, and brother were all wearing the same shirt...so yep, picture worthy, with my dad making a silly face for the pic:

Just before bedtime, Kylie was playing with her Uncle Joey. She did such a great job warming up to everyone and it was so wonderful to see this. At our last visit, she didn't want to give hugs to anyone, but this one was different...she gave hugs a lot when we would ask her to give someone a hug to tell them goodbye or goodnight.

The next morning we got to meet up with another friend of mine, I have known her since the 6th grade. She invited us to come with her family on their boat, so that was great to just relax and enjoy the time on the water with some friends.

Here is pic Matt got of Kylie and I...as you can she was rather not so happy. We had quite the meltdown getting the life jacket on her...oh, how the sensory issues are not so pleasant. After being on the boat for a little bit, she did great and really seemed to enjoy it.

...still a little uneasy here, but getting better.

My friend's beautiful little girl!

Kylie playing with her new friend.

A pic of my friend and I just before we left. I know she is so cute and tiny...maybe one day I can grow up to be just like her :)

Moving on...(edited)

2011-06-23T15:45:00.003-05:00

So the last post was about how Kylie was dropped from our Early Intervention program in Kansas. Since then, a good friend of ours from our church sent me some info about the Lee Ann Britain Infant Development Center.

Here is a bit of a description of the Lee Ann Britain Center and what they have to offer...courtesty of their website:

Dedicated to serving children with developmental disabilities from birth to six years of age, the Center provides a unique program that involves parents and siblings in the process of therapeutic treatment and education. Individualized programs are shaped for each child and family by a team of physical, occupational and speech therapists, early childhood special education teachers and music therapists. Through an emotionally supportive environment, the Britain Center staff helps parents, siblings, grandparents and friends adjust their expectations and way of life as they learn to raise and nurture a child with disabilities.

This is a place that our EI therapist had mentioned to us before, but never really went into much detail about, or gave us info on what they offer. It was more or less mentioned in passing. So after our friend told us about it, Kylie and I took a tour of the facility I felt that this would be the perfect place for her!

I had a mix of emotions after our visit: A bit sad that I had not known of all they provided sooner...I could only imagine how much more Kylie could have progressed had we known of this place. Then I was totally grateful that we now know of the Lee Ann Britain Center, and can only move forward from here.

Kylie attends the center once a week, on Fridays, where she has OT from 8:30 -9am and then she attends their toddler class from 9-11:30am. I am present for her OT, but leave while she is in her class.

I came early to pick her up on her first day, and sat in the last few minutes or so of her class. They do a music class as part of their daily schedule, and I was definitely in tears within the first couple minutes of seeing her. You see, they were passing around a little tub of animalss, as part of the song they were going to sing. She has always been very stressed when things like this happen, because all attention is on her to choose something...which is often too much for her. All I can say is that Kylie is in the best place for her therapy, because she was so ready for it to be her turn, and she excitedly selected her animal!

It gets even better :)

When she was called upon to say what she had...she told them "I got a chicken!" Yep...more tears for momma.

Kylie did get really anxious and didn't want to sit down, because she so very much wanted it to be her turn for the teacher to select her animal during the song. She kept shouting out chicken and was getting pretty hyper and all giggles...something that we will work on with her OT in trying to balance out that sensory system. For now, we enjoy that she is able to participate more and be excited about it, rather than stressed.

Oh yeah, and they said she ate the snack that was offered to her at snack time! She would never eat during snack time at her school...so this is another HUGE step!

I had called Matt before I even left the parking lot to tell him that this is the place that Kylie needs to be right now, and how she made progress on the first day she was there. One more thing I love is that during her OT last week, her therapist said that she will help me plug things in throughout our day, to help Kylie and maybe find a good balance that works best for her. We will work together setting up a schedule of a typical day for us, and what we can do to help make the days go a bit smoother, and for Kylie to be less stressed and open up the window of when we can work with Kylie to do more things with her.

Kylie will miss class this week, because we are in Ohio for her follow-up apptmt with her neurologist at the Cleveland Clinic. We see him late Monday afternoon. I will be sure to post how things go there.

I totally forget to add this note in the beginning of the post, so I will put it here. Kylie's new Developmental and Behavioral doctor had sent a letter to us to forward on to ITSJC (our EI program here), stating that Kylie is in need of continued services and so on.

Even after that was sent to them...they met, and still said that the conclusion they reached is the same. They have provided all the services they can for Kylie, and she does not qualify....hence, the title and subject matter of this post.

Hide and Seek...time to hide

2011-06-10T21:07:00.003-05:00

Okay, so this past week has been nothing but pure craziness, and I am ready to go into hiding....for good :)

Let me just recap with the last 24 hrs. After going out to eat at Applebee's of course, I take my ring off and get some gloves on to finish up my yard project. I had put 7 bags of mulch down earlier in the day, and just had 3 more to go, and my project would be complete. I was so eager to do so, that I forgot where I put my ring, and with my mind being crazy from the previous days, I could not even picture myself taking it off or where I may have possibly placed it....it was lost.

I was worried that I may have been careless enough to put it in a place where Kylie could get it. So we talk to her about it, and she says that she had it....and takes us all over the place...in her playroom, downstairs, outside...says it was in the garage, in the mulch, in the tree...after the tree comment, we figured she had no idea.

We searched the garage after we put her down, and search the yard with flashlights. Nothing. Paranoid, I sleep in Kylie's playroom, just in case someone were to come by and find it...crazy I know, but this is me when I am freaking out about something.

I have crazy, scary dreams and don't sleep well, wake up for good at 6am and search the garage and yard all over again. Nothing.

Once Kylie is up, I get her dressed and take her to a new place for OT and for a toddler class (more in an upcoming post). I share my ring dilemma, and they say that I can leave after her OT is done, while she is in her toddler class.

Kylie does amazing as I leave, and I got rent a metal detector...yep, a metal detector. Of course it is raining now, so I search the yard with the metal detector in the rain..neighbors must think I am crazy..oh well. Nothing.

I come in the house to scan the dog with the metal detector...you never know, right? As I come in the house I take my shoes off. I see a cup on the end table...a large plastic cup with a lid and a tall straw. I immediately think that I had placed my ring over the straw, and I look and see it there! The cup was on Matt's workbench in the garage, and while we were searching everywhere, he cleaned off his workbench and put the cup in the house.

Lesson learned: Never do yard work again :) And, perhaps not worry about my ring getting dirty, so not taking it off again.

So, onto the next and craziest part of all.

Matt gets a call today, that the server that waited on him over the weekend was being treated for bacterial meningitis. This is something that would definitely alarming to people, but even more so, to someone that has a child whose immune system was once severely compromised from a medication, as a result of a incredibly rare form of epilepsy.

So my ring fiasco, was nothing compared to Matt on the other end of the phone today, fearing that his exposure to this person could affect Kylie...our sweet girl that has been through more than we could have ever imagined.

The smart guy that he is had already called his doctor and Kylie's pediatrician to see what they had to say about it. They did say that symptoms should have presented them self by this point, but to keep an eye on her. They also mentioned that it would be pretty rare for Matt to have carried something like that back to us....but with IS being so rare, we can't take anything like this lightly.

Matt got a call back about 3o minutes after calling me, saying that the health department ruled out bacterial meningittis. So enough time for us to completely freak out, to then say it wasn't that, and that the diagnosis was still unknown.

Later in the evening, Matt saw that Kylie's pediatrician got back with us and left a message saying that if Matt was feeling okay, then there was no need to worry about Kylie. It all just makes me sick to know that something very scary could have happened again. I can't go through anything else right now, none of us can. I just feel that I could really break, so I will be guarding myself a lot for a while.

The hard thing is that it makes me feel like okay, maybe we need to revisit the idea of getting Kylie more of her immunizations. Then I recall the little guy whose blog I found, and his family was preparing his one year seizure free celebration. They were just one week away from the big celebration when he got one a shot at the doctor's office, and within hours he began seizing and still has seizures to this very day.

This is the very shot that we were thinking of allowing Kylie to get, but we can no longer go through with it.

I do not know that I can live with myself knowing that we said yes to the shots, and this very thing happens to Kylie. Oh, they say it is so rare...so is Infantile Spasms. I also do not know what I would do if she gets something that could have been prevented by a shot.

I know this is the obvious to so many, but not so much to some that feel like they need to get their point across...but anyhow, no need for lectures on shots or anything else...right now we need lots of support and love, because we are feeling pretty shaky right now.

So yeah, this is all in the last 24 hrs...actually it was more like 20 hrs, but who's counting. Thanks for following and staying with us :)