The Great Pumpkin

So, we've been relatively busy taking Kylie out and about so that she can experience her first Halloween. For those of you that don't know, her first Halloween costume is a Pumpkin. It is seriously ridiculously cute.

On Wednesday, Jody and Kylie came up to see me at work for our annual Trick-or-Treat event. It was a boat-load of fun, quite a few of my fellow Applebee's associates brought their kids up to take part. We meandered around the building and wound up with a pretty good haul.

Then, on Thursday we all loaded up and headed for my favorite store, Bass Pro Shops. If you've been reading this for a while, you'll remember that we've gone to Bass Pro to see Santa and the Easter Bunny. They really do a good job with the holiday stuff. Anyways, we got there just in time for the costumed kids parade. Unfortunately, Kylie wanted no part of that, so we did our own mini-parade throughout the store. Kid's could also trick-or-treat at quite a few places around the store, so we loaded up on candy yet again.

Here's a little video montage of her wandering around...

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Here are some pictures from Wednesday and Thursday. Most are from Wednesday, but be sure to check out the picture with Kylie reaching for the scary bear's mouth at Bass Pro!

Then last night, Halloween proper, we went out trick-or-treating with our neighbors and their two young boys. We headed out pretty early, about 5:30 and went up and down our street, which isn't very long. I'm fairly certain that Kylie had the most fun crawling up and down the steps on everyone's front porch. She did really well. One particular lady gave her a couple pieces of candy and then put a couple more in her bucket. We told Kylie to put the pieces she had in her hand into her bucket, and she did! What a smart cookie! And again, we loaded up on candy...

The neighbor's had a camera, so we'll try and post pictures once they send them our way. In the meantime, here are a few from my phone. Enjoy!

We had an absolute blast watching her experience her first Halloween.

Punkin goes to the Patch

So the posting has obviously gotten a little less frequent - our apologies to our loyal viewers for the lack of recent updates. However, there just hasn't been much in the way of news. No news is good news!

Last weekend we went out to the pumpkin patch in Gardner, where we snapped quite a few really cute pictures of the little one.

It was pretty cool last week here in KC, so we had to get her all bundled up, as you'll see in the pictures below. How cute is that hat!? We get out there and the wind is blowing about forty miles an hour and noticed that everyone in the Kansas City metro area had decided to take their kiddos to this particular pumpkin patch at that time. Holy cow. The only time I've seen more kids and strollers in less space was a few weeks ago at the Deanna Rose farmstead. Pure chaos.

Kylie had a good time, or so it appeared...she wasn't quite sure what to make of the pumpkins, but she had plenty of people to watch! She tried rolling the pumpkins around - just what she does when something is too big to pick up.

Then just today we went out and raked up all the leaves in the front yard. Kylie wasn't too thrilled about being in the big pile of leaves, but she didn't seem to hate it either. She had fun wandering around the front yard while Mom and I did all the work.

Enjoy the pics of our little punkin!

Prayers for Trevor

So after seeing another IS momma's post about Trevor, I realized I needed to do the same. Trevor is a beautiful little guy with an infectious smile and eyes full of wonder and hope. He will be undergoing brain surgery, as a hope to slay the seizure monster that has been holding him captive for too long.

Please keep him and his family in your prayers. His mommy has been of great support to me when Kylie was diagnosed and that has meant so much to me. Sorry I didn't post this sooner or think of it all on my own, but everyone needs to see how sweet this little guy is and pray for him and his family.

Hodge podge

Wish there was something big and fun to post, but there really isn't. It's kinda nice have a bit of normalness to life right now. Kylie is so big, and wow does she just go go go! She is so darn happy and very interested in pretty much everything...like a little explorer out on expedition all the time :)

She has recently started going through her diaper bag and just taking everything out. She does the same with her toys downstairs. We recently got some ottomans that serve as storage, so we use them for her toys in the family room. So needless to say, she has not gotten the bits of my personality of having things all picked up and in order...lol. She likes to do laps around the love seat..no idea why, but it is cute. She absolutely loves when we chase her, and the we go "BUZZ" when we get her, and she cracks up, and we just keep going until we get tired.

She loves to read books too. She will go grab her books and throw them on the floor and now she will bring us a book to read to her....her not so subtle way of doing this is by throwing them as she walks over to us :)

Matt has taken her to one of his favorite places Bass Pro Shops on several occassions to give me a bit of break sometimes in the evenings, and he lets her push the stroller or just walk around following him up and own the aisles. He took a little video on his cell, it is so cute!

I have no idea why, but for some reason this silly girl of ours likes to put her mouth on the windows and just goober them up. She was preparing to do this on the sliding glass door, so Matt hopped outside with the camera to catch a few pics. Oh my goodness, she just cracks us up!

This pic is one that will melt your heart. It has been getting kinda cool outside here, calling for more than just a hoodie on some days. Here is Kylie all ready to go outside and play in her hat and coat. Just look at those eyes and cheeks! This is why I love hugging her and giving her kisses so much..she is too cute not to :)

Walker, Texas Ranger

What a great show that was. Absolutely classic.

So, this post is a little late - but better late than never, right?

As you all know from two posts ago - little Miss Kylie has been standing on her own for a couple of weeks now. However, once she got onto her feet she'd just kind of look around and maybe bounce a little bit.

But no steps.

That is, until a few days ago.

September 9th, to be exact. She would stand up and then scoot her feet once or twice and then topple over. So, it wasn't really walking, but she was semi-mobile on two feet. In the ten days or so since then, she's gotten quite a bit better. However, it wasn't until this weekend when she really starting getting it figured out. She can now occasionaly take between 15 and 20 steps - or about four to five feet if we're measuring in length.

Take a look at the video below for a pretty good example of her current "walking":

For reference, that rug is eight feet long! She's so awesome.

Needless to say, we could be any prouder! Is prouder a word? It is now.

Let it be known for what it IS

After reading some posts on blogs of fellow IS families...I thought I ought to help do what I can to show how little people really know about Infantile Spasms. For starters they can't even pronounce it right, so how do we ever begin to educate people about this?

So where is this coming from? This evening on CBS there was a whole deal about the poor insurance companies, but in part of that were the people that the insurance companies drop...individuals and families that are not only under the stress of medical illnesses, but the added burden of financial stress because of insurance companies dropping them or denying them coverage.

Here is a link to the segment about insurance companies, just fast forward it to 2min 51sec, and you will see the story of a little girl named Sydney, and her father as he tells how they were dropped from insurance upon Sydney's diagnosis of Infantile Spasms. Problem is CBS refers to it as Infant Spasms...maybe not a big deal to the average person, but when your life and your child's life is flipped upside with a diagnosis as rare as IS, you would like it to be recognized appropriately.

With that said. I am borrowing the number from a friend's blog post for CBS. So please call the number (212) 975-4114 and kindly correct them....better yet, suggest they do a show educating people about Infantile Spasms.

If you need some inspiration, just look at this face. This was the last picture taken (just 5 days) before Kylie's was diagnosed. Sad thing is there are soooo many other faces and families out there that have been afflicted with this same diagnosis.

I scream you scream...

...We all scream for ice cream! This past weekend we thought we would treat ourselves to a trip to Dairy Queen, and that is where Kylie had her first taste of an ice cream cone. It was so stinking cute too! She reached for it as I was trying to give it to her...almost as if she was about to take it all in in one big lick..lol

Matt took some pics with his phone, so sorry for them not being extra clear, but they are too cute. It was so funny, because when she would get a taste of it, she would make such a terrible face (and we would crack up)...I think because it was so cold, but she would grab at it for more! Anyhow, enjoy the pics :)

Sneak Peek of Family Pics

Hey everyone! Our photographer (http://www.jfieldsphotography.com/) sent us some pics to tie us over until they are all ready...the suspense has been getting to me :) We know she had the most beautiful baby to work with, but wow...she captures Kylie the way we see her...our sweet, happy baby girl. Yes, I am crying now...this is our baby, and our little family...just take a peek for yourself.


She is so cute playing in the grass. She loves to pull it out. Don't you just love that fuzzy hair of hers!




Below is a pic of us reading her favorite book "Hooray for Fish!" Can you guess who got it for her..lol Yes, Matt. He loves to fish, so it was only fitting that he find her a book about fish.



This pic is soo cute of Kylie crawling on the dock towards the photographer. She is such a doll!


I love this pic so much! Kylie loves when we lift her up like this. It makes us smile and laugh when we see the excitment on her face.

Doing it her way (Added pics 9-14)

Every baby does things their own little way, and well Kylie definitely has hers. Today was her first little contest...Sweet Pea Baby Crawling Contest at the Lenexa Spinach Festival. We were positive Kylie would do great, since she loves to motor on all over the house, and taking out anything that gets in her way.

There were 16 babies signed up, and only four lanes for crawling, and Kylie was in the 3rd heat. It was so cute to watch the babies and the parents trying to entice the babies to crawl toward them...usually with cell phones, keys, or real baby toys. Anyway, Kylie's name was called so we got our game faces on and leg warmers to protect those knees and give her some traction. At first she and the other babies just sat there, trying to figure out what was going on, and then dad tossed out a cell phone and she began her bear crawl after it. She did great and she WON!! Yippee, our baby girl won and it was so cute and exciting!! No one but us knew how big that was. It was more than just a contest...it was our baby girl out there with other babies, and doing something we didn't know she would be able to do a few months ago. Then the unexpected happened...

...the lady that announces the start and finish told everyone else to keep crawling because she said Kylie didn't win...huh? She said the judges decided that she was disqualified because she didn't have her knees on the mat and that she had to use her knees. So we took her back to the start and she continued to do the bear crawl. I think some parents were saying their kids weren't crawling because the mats were too hot, so officials decided to flip the mats over and start again. Once again, Kylie decided to do it her way :) Love that baby so much!!!

Ha..on a kind of funny note, the kiddo that they say won her heat just used his arms and scooted on his belly, and the mom next to me said, "hey, he didn't really win then because he didn't use his knees." She was trying to make me feel better, and nice enough to see that it was silly of them to disqualify her. How do you really disqualify a baby anyhow...oh well. Don't worry I booed when they said she didn't qualify to win...yes, real mature I know, but that's okay by me :)

So yeah, I got a taste of what it will be like to see my baby against other kiddos and how you want things to be fair, and them to have an equal chance, and how she shouldn't be disqualified for doing things different. The good thing is that these are the easy times, the times when she is young enough and doesn't really care about what happened or how people see her. I'm just guessing it only gets tougher as they get older, and wow I'm gonna need to do a lot of deep breathing and biting my tongue, and having Matt hold me back..lol

Hey guys, I remembered some pics were taken of us and Kylie at the Spinach Fest (from a local guy that takes pics of events in Lenexa), and I just found a bunch on the website. I tried to title them, but here's a quick run through of what happened:

She starts out chasing dad's cell, then gets it at the end and stands up to celebrate, then dad is so excited that she won (he didn't notice their announcement), then we have her at the start again, (she's in the far back), and then she decides this is boring, so she goes to investigate what is going on with the baby next to her.

Stand up, stand up...

So Kylie loves to stand like all the time now, and I thought I would capture that on video. I showed Matt and he said it had to be on the blog. She usually gets so excited when she stands, mainly because we usually cheer her on. Her pulling herself up and standing is still worth celebrating to us...things we weren't sure she could do or if she would have trouble doing them.

Long before she could stand on her own, she loved to stand up with our help. That caused me to make up another song for her...

"Stand up, stand up. Everybody shout: stand up, stand up. Cause there's no doubt, you have more fun when you move all about!" Sorry to disappoint, but I am not singing this in the video :) Enjoy!