Sunday, September 20, 2009

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.

Thursday, September 17, 2009

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.

Wednesday, September 16, 2009

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

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 :)

Tuesday, September 15, 2009

Sneak Peek of Family Pics

Hey everyone! Our photographer ( 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 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.

Saturday, September 12, 2009

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 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

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!

Friday, September 11, 2009

Sunny day

Today was a pretty good day for miss Kylie and mommy, so we took advantage of it. Kylie has been a bit of a bear lately, and I just have no idea why or what is going on...hoping and praying she was just in a funk and nothing more is going on. It's hard to wonder if you are thinking too much, or if things are okay, or if maybe you're just not thinking right at all...just a bit of what goes on in my head..kinda nuts.

Anyway, today was a good morning, and since I got showered and all ready before Kylie woke from her nap (so rare) we decided to go visit daddy at work. We just stopped by and said hello to a few people that saw us, and Felicia was stuck in the middle of something, so sorry no pictures of Kylie with the lady with the big heart.

The weather was so nice outside that we took advantage of that and played outside on a blanket with some toys, and that got old so Kylie began pulling the grass out and crawling about. Seeing how cute she was, I decided to grab some pics of her. You'll notice that I decided to dress her in patriotic colors since today was the anniversary of 9/11. Our little USA baby celebrating her own bit of freedom too :)

Sunday, September 6, 2009

Long Day...long weekend

Yesterday was a day I have been waiting for for quite some time picture day! I so wanted to get family pics when Kylie was younger, but my whole state of mind after having our first child didn't exactly allow for that. So I was determined to have them done at 6 months, and well that was during the time when our lives were turned upside down, and well Kylie was so chunked up from the meds that it just didn't work out either. So I was bound and determined to have them taken at 9 months...I had no idea that when you want a good photographer, and need them taken outside to avoid using a flash (because of the whole sensitivity that can cause seizures..not that Kylie has ever responded to them during the EEGs, we just don't want to take risks), that you don't always get in that day or the next day. SO, we had family pics with Kylie at 10 months old, and it was quite the day.

The final decision on what we were wearing didn't happen until the day before pics, and wow I was worried that it wasn't all going to come together in time. Yes, that is right, the biggest problem I had to deal with recently is what we were going to wear! I know, I know, some families may be wishing that was the least of their worries, but I have been there too...not knowing how we would make it through, but we did. Lots and lots of Prayer...that's all you can do.

Poor Kylie is getting a molar in and boy is she fussy and does not always care to eat sometimes, and especially when dad is around...I usually have to kick him out of the room when I am feeding her. Since I was out getting my hair cut and some my makeup done (oh yeah, I was going all out :)...this was such a big day for us, especially to me) it was up to dad to feed the munchkin, and from what I was told it did not go over well at all. The little lady was super unhappy, so I was worrying that our big day was about to unfold before it even got started.

We got to the park and snap snapping of pictures for the next hour and a half or so. It was so much fun, and so tiring at the same time. Trying to keep Kylie happy and smiling, and walking all over for all different types of pics...I think it is time this momma starts going on more walks with Kylie. Anyway, all of the playing and lifting Kylie up caused her to spit up at least 5 times or so. We hadn't been taking pics for too long when she spit up the first time...I said "oh no, I guess our photo shoot is over." Our photographer assured me we were still good to go, and if need be she could do wonders with photoshop.

I am sooo anxious to see the pics, but it may be 1-2wks until they are ready for viewing. I am excited to see the ones when we were on the boat dock where Kylie was crawling toward our photographer...I think she was really just going after the camera :)

I forgot to ask the our photgrapher to get a pic of my shoes and Kylie's..they are kind of similar and I thought it would be sweet to see little feet next to momma's. So, Matt took some pics when we got home. Here's to little feet...

So yes, it was a long day and we were all so tired when we got home, but the long weekend will give us time to recuperate.

Wednesday, September 2, 2009

What a big heart...

I can't tell you how many times Matt has come home from work with a thoughtful gift, coupons for baby items (can never have too many of those), or just telling me how his boss (Felicia) said not worry about coming to work on the days of Kylie's EEGs, or to just take the afternoon off after a frantic call from me for who knows what. Wow...that was a long rambling sentence. Anyway, that is a good example of how Felicia has continued to always think of Kylie and not just be a boss, but be a person with such a big heart and be so caring to us's never ending, kind of like my thoughts :)

Felicia was there when Kylie was admitted to CM with a UTI, and she came down to bring us lunch and make sure we were doing okay. Goodness, she came down when Kylie was at CM with her diagnosis of IS, and she brought a bag of treats...Matt's favorite snacks that he has at work. She was also there for Matt's co-worker Bobbie and everything she has been through with her little guy Dylan. No matter what, she is always so kind and tells Matt that work can wait, and they will do whatever he needs. It seems like it has been a while since I have worked, but I know enough to know that not all bosses are like that...heck, not all people are like that.

I still remember the gift she gave Matt to give me after Kylie was born. A little bracelet for tiny, with her name on it, and a matching one for me. It made me cry then, and it's making me cry now. See, she is always so thoughtful. It's not the stuff she does or the things she gives us for Kylie, it's the heart she has, and that she has room in it for so many people. We can never thank you enough for being you!

So what prompted this...well, Felicia's most recent thoughts of Kylie were photographed below.

She made a Royals Bunny for Kylie at Build a adorable! It's Kylie's very first one. I tried my best to get a picture of Kylie grabbing the ears, and flopping them around, but when she saw the camera she began flapping her arms with excitement and knocked the Bunny

I'm sorry I don't have a pic of Felicia with Kylie. Each time I have gone to surprise Matt with a visit at work, she has not been there. Don't worry, we will get one soon enough.

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