So many blessings

This is what Kylie does when we say "Yay!!!" We are so thankful to have this beautiful and amazing little girl to call our daughter. She is an inspiration and has filled our lives with lots of joy and many, many smiles. We are definitely blessed that He chose us as her parents, and all the love that He has for us all...nothing is greater than that!

All that we have been through this past year has made us see that life is in all the little things and we really need to treasure the moments we have together. Let's make the best of every moment and hope for a better year to come :)

With the many smiles, comes laughter...nothing is more precious than a child's laugh :) Here is a clip of one of Kylie's favorite games...running around the loveseat while one of us chases her. She usually cracks up laughing the whole time, but the camera kind of threw her off a bit. Lots of love and blessings to everyone!

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Boo-day contd.

So if you read the previous post, you saw that Kylie was definitely not interested in her pumpkin cake for her birthday. Actually she did try to go for it, but we weren't quite ready for her to take the plunge, so we tried to keep her back....so yeah, we think we are a bit of the reason why she wanted nothing to do with it. She is kind of like that...she wants something when she wants it and not when you want her to have it.

We decided since the pumpkin was pretty well in tact that we would keep it refrigerated until her actual birthday (November 4th). We got her down to a onesie and crowned her princess once again (I love that crown!) and we laid out a plastic tablecloth on the floor with the prize pumpkin in the middle. Here is some footage of what happened.

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Our local news station, Fox 4, has a weekend segment where they feature First Birthdays for those that send in a picture of their little one. Of course we had to send in her picture, because she is so darn cute, and everyone needs to see that she is having her first birthday! We must not have made the cutoff for the feature last weekend, so we got to see our princess this weekend...she is such a star! Here is a link to her picture...Click on Nov 7-8 Pt2

Kylie's Boo-day Party

We decided to throw Kylie a 1st Boo-day Party...Matt thought it would be fun to have her 1st birthday as a Halloween theme. Not a bad idea at all, afterall ,I was hoping she would have arrived on Halloween :) Anyhow, I just had one condition...she got to be a fairy princess or something totally girly for her 1st birthday :)

It was quite a bit of work, but I did enjoy searching for lots of fun and creative little touches for her party. Some how the pictures that Matt had taken of all my work got deleted or just vanished, so I will try to paint the scene for you all. We had a cauldron filled with pink potion, and just next to those were jars filled with magic wands covered in magic dust (pretzels dipped in chocolate and covered with halloween sprinkles). I also had slips of paper for guests to write a birthday wish on, and then to place in her pumpkin bucket....I intend to give these to Kylie on her 18th birthday.

The kids were entertained with a ghostbusters game. This was some plastic pipe cut to different sizes and painted white with ghost faces drawn on them, and a ball to throw at them (like bowling). Another game was monster toss, this was three plastic buckets (a ghost and two jack-o-lantern buckets), with plush monsters to toss into them. We also had a hay bale with a scarecrow and pumpkins to use as the back drop for taking some birthday pics....some how that really didn't get used..lol

Kylie really enjoyed being able to run all around the room, and she loved being around the other kids! She is definitely a bit of a social butterfly..sooo not like her mom and dad. We had her dressed as a fairy princess and even had a crown to top it off! I found the crown through another IS mommy's website. If you would like a crown for your little prince or princess, please click here, and it will take you to their blog. You can even get one customed made to match an outfit or costume like we did! All of the proceeds help offset the costs of any therapies not covered by their insurance.

Below is a slideshow of pics from her party..enjoy :)

Below is Kylie and her pumpkin cake at her party. Hmmm... it's not looking like she is all too interested in diving into it, so check it out to find out.

It was great to see everyone there, happy and ready to celebrate our princess and how far she has come. She is just amazing and so cute...I can't seem to say that enough!'

Happy 1st Birthday Kylie!

I spent some time Sunday night going through hundreds, and I'm sure it is well over a thousand pictures that we have taken of Kylie since she arrived 1 year ago today. I remember when we got home from the hospital we saw that we had already taken about 200 pics and that was just in the first couple days of her life.

I remember thinking I could not wait to see our baby girl, and then thinking wait..I'm not sure I am ready for this..maybe I will just be pregnant forever :) Her arrival just filled us with all sorts of emotions, and I couldn't believe she was here, our princess! I remember Matt calling her his little punkin and I called her punky because she was so feisty. Matt and I still talk about how beautiful a day it was when we brought her home. Our heavenly Father had this truly beautiful path laid out before us, and when we drove down our street it was so bright and sunny, unlike the other streets we passed on the way home, and the colors of the trees were so vibrant...like He was welcoming Our family home. It was very surreal, and so incredible. He loves us so much!

As a first time parent, you have no idea what to expect or what you are truly in for. It is definitely a rollercoaster ride for sure...one that is in the dark and you have no idea what twists or turns are coming up next. We had some difficult times from Kylie having huge troubles nursing, to our scare when she had an ambulance ride at 3 months with a hospital stay, to her diagnosis of IS just 2 months after that. She has also given us lots of happy moments with her continued development, and the smiles..oh those Sweet smiles! Despite all that she has been through we are not only still standing...sometimes leaning, but Kylie has been just amazing through it all.

I think all that she has been through in her first year of life should teach us something...something about how a little person, with no control, no say about anything that is happening to them can be so happy, and just constantly on the go. It is as though she she has been untouched by all the crazy stuff that she has been through. She very well may never remember any of this, but as her mom and dad we will have the wear and tear on our hearts...the places that she has since filled in with her love and amazing spirit. We are so glad that He has chosen us as her parents, how blessed we are to have her as our daughter! We thank God every day for another day with her and all the many blessing He has given us.

I'm sure I could go on and on...right now I can't find the words, it has been kind of crazy lately, and I feel like I am already stumbling through this. I will leave you with a couple slideshows of Kylie from her 1st year. There are two, since it only lets you upload so many pics per slide show. Enjoy the shows, and our beautiful princess :)

Part II

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.