Thursday, May 26, 2011

Pics, pics, and more pics!

Okay, so after taking some super cute pics of Kylie a couple days has kept me taking more and more pics over the last 2 days. I thought I would share them with you all. The very first one is definite that I plan to have a large print made of.

Yes, I did a bit of editing to the first bunch, so you will see that they are all black and white, and really beautiful....all thanks to Kylie :)

Really love this one too!

Talking on one of her many cell phones

I thought it was time for Kylie to get haircut #2. Her bangs were finally growing out enough and catching up to the rest of her hair...but trailing behind enough that she sometimes looked like she had a mullet type style.

There are a couple pics of her getting her hair cut. We were a bit nervous because the stylist that cut her hair the first time was no longer there....and Kylie is big on the whole predictability of things, and having things consistant. She never ceases to amaze us though....she let the new stylist put a cape on her and blow dry her hair...something she wasn't okay with the first time she got her hair cut. YAY for our big girl!

Look how cute her hair is!

Enjoying a much needed popsicle after recovering from getting a big owie on her elbow. You can even see the dried tears on her cheek.

So the popsicle was all over her clothes, so we went inside to change, and put on yet another dress. Kylie wants to wear a dress every day lately...kinda cute :) Anyhow, when we got back outside, she fell fun. I told Kylie we should go inside, and she screamed NO...said she was okay. Then I caught her examining her hands to see if she got another owie...she did, but wouldn't let me near her.

Checking out some bugs...making sure they don't come near her

She found a baby pinecone, and was so excited to show it to Matt when he got home today. She insisted it was an acorn, and was not too pleased when we told her it was a baby she is checking it out to see that mom and dad were right.

Friday, May 20, 2011

...and we all fall down.

That is simply how I feel right now. This morning we had what was our last apptmt with Kylie's therapist through ITSJC. After the last couple of emails we exchanged, I realized this is exactly what was coming...a couple of days could not have prepared me for this, and I'm feeling like a puddle of goo.

Here is some background for you. When we got started with ITSJC, we were getting services for Kylie's speech delay, and during that time, our Family Service Coordinator picked up on some sensory issues that Kylie was exhibiting. How awesome that she was so intuitive and had the foresight to bring in an OT and others to help us with all of that...but now we all fall down.

Here is why:

This is the confusing all the areas they test for, Kylie is not showing anything to qualify her for services. But, it is those very areas...sensory, and anxiety, that has kept her receiving services, yet now they are not longer being considered...or perhaps they never should have been considered.

It is just a mess for me right now, Matt okay, now what? We have started seeing a new Developmental and Behavioral doctor for Kylie's anxiety issues, and he feels that services need to continue. So hopefully with his recommendation and evaluation, it will be deemed as sufficient means for getting Kylie's therapy reinstated. But then the flipside, is like okay...let's have them continue therapy, only because this doctor says so, and because they feel there is a need...or something like that.

You see, we were told by a neighbor, (that works in our school district's special education department, where children continue on once they turn 3) that if Kylie remains in this program through ITSJC, that she will more than like qualify through the school district. Our therapist says that was misleading isn't entirely true...that the qualifications are very specific. I have no idea what the full puzzle really looks like, because nothing seems to have been clear....why Kylie contd receiving therapy, when she now can not have it anymore, and whatreally makes a child qualify through the school district.

All I know for sure is that Kylie has come a long way. I think sometimes it may appear that I do not see the progress, but it is only because I have to be her advocate and fight for what she still needs...what we need to continue helping her with, and the support that comes with that.

So yeah, now we wait for the doctor's paperwork and so forth to come through, so we can forward it to ITSJC, and then they say okay...since your doctor says there is a need, we will come back.

If you could all just see how heartbreaking it is to watch Kylie be so anxious and stressed out when people we have been around for a while approach her, and she is terrified when we go to our church group if we try to get her to stay with all the kids, how she won't try new things because it is just overwhelming for her, and she will eat better when we are not around or won't eat when others are around.

No, I am not tyring to go on about the negative, but simply trying to prove why therapy is needed. She hardly eats snacks or lunch at school, has had a couple days of refusing to go potty at school, won't participate in some of the activities ast school, will not talk when she is stressed or uncomfortable to express her needs or why she is uncomfortable....all of these things are effecting her growth and development.

K, I feel like I am just rambling and not getting anywhere. I just want Kylie to have everything she deserves and be able to experience the same things as every other child..not just have the same opportunities, but be able to experience them openly and fully.

Thursday, May 19, 2011

School's Out...

Today was Kylie's last day of school. I was trying to figure what I would do today, and how much I would be able to get done on my last free day. Well, I ended up being non-productive and delivered a baby blanket to Kylie's Kindermusik teacher...she is expecting baby boy #2 next week.

I also had lunch with Matt...that was nice to have some time together, and actually get to enjoy a meal once it is served :) Funny thing is we were/are both so tired, I think we could have easily fallen asleep at any moment.

Oh yeah...this blog is about Kylie, not me :)

So I arrived at 2:30pm to bring a last day of school treat for the kids, and most of them were still asleep from naptime.

I woke Kylie up at 2:45, so she could enjoy a cupcake and spend a few more minutes with her classmates before the day was through. I think she was a bit startled, because not only was I waking her up, but her teacher walked over to open the blinds (right next to Kylie), and started talking to her too.

Kylie began to cling to me, and then started crying...all worked up. She was stressed about eating a cupcake...I think it was more about eating a cupcake around other people. Made me kinda sad for her. I had my camera with me, so I could take some pics of Kylie with her friends. I wasn't able to take any pics, because Kylie wouldn't leave my's like she was scared.

She has been like that the last couple of times when I have picked her up. The teachers haven't said anything...I get a little sheet on her day, and nothing is too different. She almost never eats the snacks they give, and usually won't do the art activities. Makes me kind of sad to see her not being able to experience these new things that are presented to her, and reaffirms her need for continued therapy.

She has always been picky about eating new things, but doesn't eat most of the lunch I pack her either. I know she eats better when no one is around, but she can't always do that.

I know this is a lot about how I feel...but it is because I worry about how it will affect her, and how she will feel about things when she is older and recognizes the gap between what she isn't comfortable with, and how big that gap is. I don't ever want her to feel left out.

Kinda made me sad when the moms were taking the kids things from their boxes...Kylie's was empty, because she won't do the projects they have for the kids. Makes me wonder if she just sets there while they do their work, or is off by herself.

Breaks my heart.

Then I see this sweet face, and it melts my heart.

Wednesday, May 18, 2011

Purple People

As usual...I am late on my posts, and behind on many more :) I like to say it is because Kylie has me so busy...and when I have free time, it seems to get filled up pretty fast. Such is life I suppose :)

I wanted to be sure to do this post on Purple Day 2011. We told Kylie that it was Purple Day, and when we would ask her what day it was, she would smile and say "It's Purple Day!"

Here is a snippet of a video that we got of her saying it:

Kylie got all decked out for Purple Day, from the crown, necklace, bracelets...she even had a purple purse too :)

Here is a quick family pic we took that day. I edited it and made it all cute, but for some reason it wouldn't upload, so you get the original pic....still cute though :)

After a couple times going to an open gym at a gymnastics place, we thought it would be the perfect way to spread the Purpleness we were all wearing. We even had one of the girls that worked there ask if we had family pictures taken since we all matched. We smiled, and Matt filled her in on what Purple Day is. Here is a pic of Kylie after she jumped in the big pit...her favorite thing to do there!

So what is better than a pic of Kylie after she jumped into the pit of foam blocks? How about a video of her doing it, and jumping down the long trampoline too.

Later that day, we made cookies and of course they had to be decorated with something purple! I made some purple icing, and we had purple sprinkles too. Here are some cute pics of Kylie decorating some cookies.

Mmmm Mmmm

So excited that she licked the icing off her finger, and didn't stress too much that it was on her hand :)

Below are some wonderful pics that our friends sent us in support of Kylie all those with epilepsy on Purple Day. Just like last year, I cried when I saw all the pics they sent me, and the number of people that participated with them.

Love this pic of Annika wearing her purple!

Below are pics of Matt and his co-workers sporting their purple!

Thank you all again for wearing your purple in support of Kylie and all those with epilepsy!

Thursday, May 5, 2011

Mom's Day Out

Okay, so I mentioned before that I would post and share all the fun things I have been doing since Kylie started school.

On Kylie's very first day of school, I was excited to have so much time to myself....mixed with some momma guilt for wanting her to start school so I can be me again (or at least work on figuring that out), and somewhat lost and wondering what to do with all of this time.

After a long walk peaceful walk, I came home and realized there was still lots of time left before I had to pick Kylie up. That mommy guilt thing kicked in a bit, so I decided that I would do a little bit of something for both of us...I would sew a dress for Kylie and accentuate her cuteness, all the while giving me a chance to make something new and expand my sewing skills.

Here is what I came up with:

Fishy T-shirt Dress

I had found a free pattern online forever ago, and finally decided to put it to use. Matt had an old fishing shirt he used to wear all the time. Since it got stretched out a bit, he quit wearing it, but didn't want to part with it. What a perfect project for me! Now Kylie can wear one of her daddy's old shirts while they go fishing together :)

One of my next projects was to add some life to one of Kylie's t-shirts. Here is what I came up with:

Fishy Playdress

I always liked this shirt on Kylie, but she is just so darn tall, that it was too short. After stumbling upon a blog where a mommy was trying to extend the life of her daughter's stained t-shirt, by cutting off the stained portioned and adding some knit on the bottom...I thought I could do that too!

I really wanted to make Kylie a stuffed bunny for Easter, but the fabric I was using, just wasn't the best, and well, it was more work than what I intended. I found some cute chicks on Martha Stewarts website, and I added my own flare to them. Here is what I came up with:

Funky Chicks

The Martha Stewart site used some pale yellow fabric, but I wanted my chicks to be fun, so I went through all of my scrap fabrics and came up with some super cute chicks. I ended up making like 3 dozen or so and sold them to some friends for their little ones.

We had a birthday party to go to last week, and after making the fishy t-shirt dress for Kylie, I thought I could do something just as fun for this little gal. Here is what I came up with:

Huskers T-shirt Dress

The sweet little girl's daddy and all of his family are HUGE Huskers fans, so I thought this would be perfect! I had so much trouble finding a Huskers t-shirt, so I emailed her grandma who was so kind to give me some of their old shirts to choose from. We added in a pair of leggings, and now she is all set to cheer on her daddy's favorite team!

I have been wanting to make Kylie a simple dress with pockets on it. After much searching online and configuring, this is what I came up with:

Berry Pickin' Dress

I ending up finding two different patterns online, and just mixed the two of them together to get this result. I am really happy with it. I also learned how to sew a button on with my machine, rather than by hand, and make button holes...yay for me!

So yes, I have been kind of busy crafting since Kylie started school. She only has 2 wks left, so I need to get all that I want done in just a short amount of time. It has also made me decide to convert our guestroom into my very own sewing/craft room. I have been on the hunt for a sturdy table that has some character to it, and aren't having much luck. I hope to find one soon, because I have lots I want to do!


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