No Boundaries

Well our princess is becoming quite the little explorer these days. It is amazing how quickly she cruises all over the place now...discovering things at all levels. Once she sees something she wants, she just motors on after it...there is no stopping her. She is a feisty little thing..just like her mommy :) ..I am learning how good and bad that can be, so it is definitely teaching me a few things about myself.

Anyhow, yesterday I left her playing downstairs while I hurried to put away the laundry, and I could hear that she was pretty loud. I figured she may be heading toward the stairs, so I came down to find that she was not only heading for the stairs, but she had already conquered 2 of them! Yes, she is a quick learner...as her daddy showed her the stairs and how to climb them shortly after she started to crawl. Oh my..lol Here is a pic I snapped of her in all her glory. She turned to see what I was doing, and slid down one step, but she was up one step higher.

So needless to say we had to run out and get a gate to set some boundaries for her. She is just getting quicker all the time, and finding new things to look at and go after. Hooray for Kylie!

We got her a swing for our tree in the back sometime last week. I figured it would be one more thing I could do to entertain her with during the day...and it gets me out of the house too. When she first gets in it and we give her the first push she gives us such a big smile. We just missed the big smile by the time I snapped this shot..but still, she is a cutie.

Today I decided to snap some pics of her while we were playing upstairs in the living room. Some of these pics are so cute! Don't you just love her little leg warmers!! They are perfect for protecting her knees as she moves about plus they are adorable too :)

Photo Shoot

Okay, so yesterday I decided to play photographer when Kylie was being so cute and crawling all over after we went for a walk...yes, I actually had enough energy that we went for a walk!

Here is a shot of her bear crawl..so silly.

She is shaking her Eeore toy here...watch out she shakes her toys so much lately, that they tend to go flying.

She is crawling toward me and talking, because she wants the camera. I love the face she makes when she talks...so cute!

Okay, so she got really close and tried to grab the camera here.

This one is just so precious! I love that profile with the chubby cheeks and little nose, and just..well.. my baby :)

Moving on Up

Well last Friday was a bear of a day with miss Kylie. It began when I put her down for her morning nap. She has been pretty good (for the last week or two) about putting herself to sleep, and that was not happening this day. After a few minutes of doing more than just fussing I go up to find that she had managed to get one leg underneath the bumpers and wedged through one of the slats in her crib. I rocked her and calmed her down and put her back down, just to repeat this process again in a few minutes. She fell asleep for maybe 20 minutes and then the loud talking and fussing began...I was thinking this can not be happening again. This is what I found when I went into her room.


Well she didn't get a leg stuck this time, but I was almost wishing that was the case when I saw her. I guess she was thinking she could try and break out or something. So needless to say she didn't get much of a nap, which just set the scene for the rest of the day. She has been quite the handful lately. Just extra fussy and wearing me out. I'm not sure if she is just getting bored more quickly, because she is only content with something for a few minutes before she fusses and wants something else. Plus with her being more mobile and pulling up on everything, I worry that she will lose her balance or something and bump her head..something that is typical with little ones, but we can't afford to have anything happen to that little noggin of hers. So of course I worry about leaving her for too long...if I leave the room, I am checking on her like every 2 minutes or so. I know in time I will get more comfortable with things and, but for now it is kinda nuts for me.

With her recently learning to crawl, she will sometimes do a bit of a bear crawl or something. She is on all fours..it is cute and kinda silly. Sometimes she will do this even when she isn't crawling...it's like she is trying to stand up, and then just holds that position as she realizes she has nothing to grab onto to hold her up. This was the best I was able to do at capturing her bear crawl.

What's better than a smile like this after all that hard work of moving around :)

The pics below were taken last night. She was definitely on the move and on a mission. Outta my way, I'm coming through and there's no stopping me...

...except for those stairs. She found the stairs, and tried so hard to get her leg up, but they are just too little to get up over the step. She tried and tried though...such a determined little lady. So yes, we will soon need to get working on blocking those off.


So yes, she is wearing me out, but it's a good thing. She is continuing to hit those milestones and for that we are so grateful. Just thanking God every day for how blessed we have been. Blessed to be the parents of this precious little girl! That is the best gift ever..she is amazing and we love her so much!

Guess Who Can Crawl

For the past few weeks Kylie has been mobile, just not forward. She's been able to roll around in pretty much any direction and she's recently started kind of crawling backwards. Well, crawling really isn't the right word, it's more of a scooting action where her goal is to go from prone to sitting. It's really pretty entertaining to watch.

Well, just today she started crawling towards things she wanted! This video is of her first attempts, so it's not the most efficient, but she's definitely going FORWARD, towards whatever she wants. She's actually done a little better between taking the video and posting this, but since the clip is of her first successful crawling, we thought we'd post it. It's kind of dark, but you'll get the idea!

Deanna Rose Farmstead

With the awesome weather we've been having (for those of you not in the KC area, we have been greeted by lows in the upper 50s and highs in the upper 70s!) we decided to take a trip out to the Deanna Rose Farmstead in south Overland Park. I'd been there once, that I can remember, as a kid and I remembered it being fairly entertaining. I checked online and found out the farmstead opened at 9:00.

So we loaded everyone and everything up and headed south. We got there at about 9:45 and the parking lot was filling up quick. By the time we left at almost 11:00, I think every single family in Johnson County with a child under the age of 8 was there. That place was crazy! Strollers everywhere with kids and parents milling about. Apparently everyone had the same idea we did with the nice weather.

Anyways, I'm not sure how much Kylie actually noticed - she's still not quite old enough to really get the "zoo" experience - but as you'll see in the slideshow, she certainly enjoyed feeding the little goats! We saw all sorts of animals...they had a Koi pond where we fed some fish, a small prairie dog town, longhorn cattle, bobcats, birds of prey (Red-Tailed Hawk, Bald Eagle and a Great Horned Owl), bunnies, turkeys, chickens, cows and the like. Pretty much a menagerie of farm animals mixed with some local wild animals. Pretty neat. The only animals that Kylie really enjoyed (read: noticed) were the goats and the bunnies, because feeding the goats was very interactive and the bunnies were chasing each other around.

Of course, I'm still freaked out about the immune system thing, so we were the hyper-clean parents wiping little hands down constantly. Can you really blame us though? Between those stinky goats and a little bit of a compromised immune system, it was probably a good call.

We really enjoyed it. For being so close to home (about 15 minutes) and free to get into, this little "petting zoo" is way more convenient than the Kansas City zoo, especially with an infant. I can just imagine driving 40 minutes to get to the big zoo, paying $20+ to get in, and then having to walk five miles (that thing is so spread out). Timing wise, it'd be tough to see much trying to squeeze that trip in between feedings and naps. I'm getting off track here. The Deanna Rose Farmstead was great. We took a ton of pictures. Here's a few of our favorites:

Moving on Up

Wow, it is just amazing watching Kylie change and just continuing to grow into her own little person! She is our little doll baby, and we absolutely adore her. I had know idea I could love someone as much as I love my baby girl! She is napping right now and I get teary eyed just thinking about her and how she has changed our lives so much..okay, so now those teary eyes of mine are flowing. I can't help it...just look at how beautiful she is!

Since she has been off of the ACTH we have seen her so much more animated. She talks/babbles a lot more now, and it is so cute to hear her little voice! She just carries on and I could listen to her babbles all the time..at least the quieter ones :) She can get loud, wow, she is definitely not shy with her thoughts and feelings...I just like to say she is very passionate about things :)

She has also been rolling around like crazy. Even prior to the diagnosis Kylie didn't like being on her tummy and didn't roll around too much. It was like after she learned how to roll both ways, she didn't do it anymore. We just figured she checked it off her list of what she could do and was moving on to other things. Maybe that was it, maybe not. Whatever the case, she is like a little barrel now just rolling all over the place. She's our little rolley polley!

Kylie really wants to crawl, but isn't quite there yet. On June 25th she started something we like to call the swim crawl. When she is trying to reach for something while on her tummy, she kicks her feet and brings her arm up around front to grab the desired object (usually the remote or our cell phones), and then tries again with the other arm. I swear it looks like she is swimming! She is great at scooting herself backwards, and boy does she not like it when she is further from her targeted object. Soon enough she will be going forward...she's getting so close!

Kylie has learned to pull herself up from sitting to standing! She did it for the first time on July 8th during a visit from our PATs educator. She has been working on this for some time and finally tackled this challenge. She just tries so hard and gets frustrated, but keeps going. We are so proud of her!

It is just utterly amazing to see how much she has changed since being off of this medicine. Well, it's not just since she has been off of the meds, but even before everything happened. Just about every night Kylie has a giggly moment....she will just laugh at whatever we say or do, and it is so cute! She is so much more full of life now and really sees more of everything...it's kinda hard to explain. Today for instance, I was playing with her and putting a ball down the side of one of her toys and it comes out the bottom (something we have done many times before and she never cared or really noticed), and she started to laugh and then she tried it over and over again!

There are always lessons to be learned in these trials we are faced with...trials we can't seem to understand as we stumble to get through them. I'm not sure if I read this somewhere or just thought about it, but it's like we were whispered a bit of a secret with all we went through with Kylie. You see, so many of us take things for granted and miss out on all the little things in life..not celebrating or thanking God for what He has given us and done for us. Through all of this we are more grateful for what we have and how He has blessed us. It's like we are the lucky ones because we know how precious every thing is...there is nothing little in our lives, everything is big, everything is worth celebrating! Everything Kylie does is amazing. She is filled with the Spirit and we get to see His love for us every time we look into her eyes and see another smile. How do you not see joy, hope, and love in that precious face of hers.

Above and Beyond

So, we haven't posted anything recently...which means no news...and no news is good news!



I thought I'd share a little bit about an amazing person we met because of what's been going on with Kylie. Frequent readers will remember that while on the ACTH we had to make bi-weekly trips (every Monday and Thursday at 4:30!) to our pediatrician's office. During one of the first visits - it may have actually been the first of those bi-weekly visits - we were introduced to one of the most kind and caring individuals I've ever met. Were obviously still in shock about the diagnosis, it would would have been on a Thursday, just two days after we left the hospital.



The nurse had taken us back to the room and done what would soon become routine. Strip Kylie down to a clean, dry diaper and take her out to be weighed. Then back to the exam room for blood pressure. I don't remember everything about that day, but as I said, that exercise became second nature after about nine weeks (around 18 visits). The nurse told us the doctor would be right in and left us to wait. After a few minutes Dr. Nelson came in and checked Kylie out - but before he left he told us that his nurse wanted to let us know she wanted to come to our home and help us out with Kylie for a little bit so we could have a mini-break.



We later found out that this nurse didn't want us to think she was weird by asking us directly, so she had Dr. Nelson ask!



Well, Nurse Rosemary has come over a handful of times and we've all just kind of relaxed and visited during those stays. Between these visits and our nearly twenty appointments, we got to know her pretty well. She is a wonderful person that obviously went well above and beyond her job description in coming into our home and helping out with Kylie. Not only that but she always greeted us with a smile and took the time to catch up during the appointments.



Here's a picture of Rosemary with Kylie during one of the more recent visits at home

A big thank you to Rosemary!

A little bit of freedom

Kylie has been off the ACTH for about 2 1/2 wks or so, and Saturday we all got to go out together and be around people! Since it was our first time out, and we aren't totally cleared to be out and about just yet, we thought we would make it an outdoors event. The city we live in has a 4th of July Parade every year, so we thought that would be a perfect opportunity to get out. I had grown up in a small town, and they always had a parade on the 4th that we watched every year (it went right down our street)...so I was extra happy to be able to share something that was just as special to me with our baby girl :)

We had spread out a blanket on the grass and brought some of Kylie's favorite toys to play with. She had a great time being outside (she Loves to be outside!), and taking in everything around her. She was somewhat unphased by the parade itself, but got super excited when the Louie Louie Band was playing as they marched on by. It was sooo cute to see her all kicking and smiling and talking as they played..she loves her music (when she is in her jumper at home, I play the radio and sing and dance to keep her smiley).

We met one of Matt's co-workers, Bobbie, her mom, and her little guy Dylan. Dylan is so cute and so tiny...I can't remember Kylie being that small! So Kylie and Dylan got to see their very first parade together...perhaps it was their first date :)

Well, enjoy all of the pics. Hopefully everyone got to have some well deserved down time and even a bit of freedom like we got to have :)