Get Your Purple On

As time goes on we learn more and more about the support and awareness of epilepsy. Through another IS mom's blog I learned about Purple Day. Some of you may not know, but purple is the color for epilepsy.

A young girl with epilepsy launched the start of Purple Day in 2008. Purple Day is Friday, March 26th.

Please join us and wear your Purple to show support for Kylie, and all of those with epilepsy. If you can, please email us pics of you and your friends dressed in purple so we can post them on our blog.

Click on the link to learn more about Purple Day.

All things Kylie

Well, okay...everything about this blog is Kylie, but there is just a lot of fun stuff to talk about :)

So Kylie doesn't have tons of hair for pigtails or anything quite like that, but I did manage to get a little sprout on top of her head, and it was pretty cute. And no, she is not a fan of having her hair done. I don't think most little girls are, but especially not Kylie...I think too many EEGs for this little lady.

I am not one to really let Kylie get too messy with eating and all of that stuff. It has also kind of worked out, because Kylie doesn't exactly like how things feel and usually gets bothered if something sticky gets on her hands. I decided to just let her have at it with some baked spaghetti, and she loved it.

Kylie's Grandma Bunn was over this weekend and Kylie got comfortable enough that she sat on grandma's lap. This has never happened before, so great strides of improvement for Kylie and grandma was excited too! Of course, we had to capture the moment with a pic.

So we went to visit our old neighbors that moved a few months ago. They've got 2 boys and Kylie did absolutely wonderful playing with them and getting comfortable. They have an amazing house with a playroom downstairs, and Kylie just went on down and played and didn't need us there with her. She is just getting so big and doing so great with all these recent social improvements. Anyhow, for some odd reason she did not want to eat the delicious dinner our friends had made, but she was eager to eat some cake. She saw that the 2 boys were eating the cake with their hands, and decided that she would eat it that way too. I could not believe what I was seeing...once again, so unlike her and so cute!

Since it was so ugly this weekend we couldn't play outside, so we decided to run some errands and go some places where Kylie could run around. We decided to go to PetSmart, since they always have dogs to adopt on the weekends and well, Kylie loves dogs. She really enjoyed seeing all the dogs and was making the sign for dog and getting so excited. While we were there we decided to get Kylie her first pet. Here is a pic of her saying hello to her new pet when we got home.

You didn't really think we were going to get a dog did you? Not anytime soon, but maybe one day when she is older. We decided to make it easier for Kylie so we named the fish Fishy. I know real creative :)

Clean ups and cuddles

Clean ups

Okay, so last night I saw that Kylie had a burp cloth and was using it to wipe off the desk. I was like how cute, she is trying to clean like mommy :)

We also noticed that her sippy cup with milk in it was suddenly empty. Matt felt around to see if she poured it out somewhere, and he didn't find anything. Then he went to step over by the stairs, next to the desk and yep...he found the missing milk. You see, she has chewed through the rubbery spout on her sippy cups, so they tend to spill out milk when upside down, and Kylie sometimes likes to watch it pour out...joy, huh :) So isn't that cute, she was trying to clean it up after she spilled her milk...it was just adorable!

Cuddles

Since I do not have pics of that I decided I needed to take a couple pics of Kylie this morning. She told me that she wanted to go up, so we went up to her room to play. I still like the sound of that...she told me up. Sorry, proud mommy moment there :) Anyway, we went up to her room and she likes to say hi to her friends that are on top of her changing table. Usually after she says hello and touches all of her friends she points to the glider. This is her way of telling me that she wants to cuddle with all of her friends.

Once Kylie either climbs up on the glider or I help her up, she starts pointing for her friends. One by one I put them on the glider with her and she just loves it. Then I will rock them for just a bit, and the hands them back to me one at a time, so I can put them back. It is so cute. Here are a couple pics of that.

In this first one I was telling her that she had all of her friends with her, and she was trying to do the sign for friend. Kinda funny sometimes, because so many of her signs looks the same, so we must consider the context when trying to figure out what she is telling us.

This one, just shows a better shot of her with all her friends.

Up, Up, and Away

No, we are not going up and away on vacation anywhere...boy wouldn't that be nice though :)


Okay so yesterday Kylie was putting some of her toys on the couch and put her hands up...this is something we have tried to teach her to do when she wants up instead of yelling or screaming.


Anyway, she put her arms up and then she said Up...yep, she sure did. She said up!


It's not just about her saying something that we recognize as a word...it was that she said it with a meaning associated with it. And not just any meaning either, but with the appropriate meaning.


So now that we heard her say her first real word, we thought we would get it on video. Umm..not the easiest thing to do. She would say it over and over again, until we tried filming. We did get one clip where she said it just once, but that is good enough for us to show everyone. Here is a video clip of her saying her first meaningful word. She says it at the very end..like around 18 sec.

Photo shoot and a little bit more

Okay, so it seems often that time goes by and we don't take pics, and then there are those times where all I do is take pics. Okay, so we are in the middle of one of the times where I am picture happy. Here is a bit of what I captured this week.

Most of these pics are from Wed before her OT therapy. She did better than she did last week, so that is good. We were downstairs playing with some new toys...a Little People lego-type of set. We figured she needed something new to play with and well, it doesn't hurt to pull out a new toy when unfamiliar people are over. Susie (therapist) was talking to Kylie and trying to interact with her and Kylie was doing fairly well. Then there was that moment where she realized..."wait a minute, why am I playing with this new person" and retreated back to me (I was only a few inches away) and started to cry. It was sad to see how much the situation upset her, and that something like that makes her uncomfortable.

Even though she was not the most social for her therapy, she was definitely the happy and social butterfly later that evening when we went out to eat. She waved at every single person that walked by us. It did not matter if she already waved to the same server 10 times, she still waved each and every time they walked by her. It was so sweet and definitely made us feel better about things.

She wasn't making this face when I snapped the picture, so it was a bonus shot I guess. It's pretty cute either way.






Like a second after I took this one she flipped her shirt up and was playing with her belly.








If you haven't read it before, you can sure tell by the pics I take that I love the profile shots best.

I also learned later that afternoon that us telling Kylie "no" triggers the odd head movements that we don't like to see. We were told that stress, fatigue, frustration and things like that are often associated with the stereotypies, but not always. We never saw any connecting factors before, but it looks like we are seeing one now.

Kinda sad because the other day we said no for something and she was by the couch and lost her balance and fell into the couch and then fell down...just makes you worry, and then thankful that nothing was near her to cause her to hurt herself when she went down.

Back to more pics :)

The rest of these pics were taken on Friday.

I just love this one! Those eyes are so sweet and those cheeks and pouty lips...what a doll!

Can I tell you all some more about how smart Kylie is? For one thing she can not get enough of the Signing Time dvds, so we are watching them all the time. She will now sit there for a little while longer and watch them and try to do the signs....it's like she is really studying them!

Just yesterday she did the sign for hungry, and she can also do bear, stop, go, wash hands, walk, train, horse, all done, baby, cracker, banana. Granted she does not use them all the time...for instance, she will sometimes do them when she is looking at pictures of them in her books, or when she is watching the Signing Time dvds.

Random with pics

Okay, so I rearranged some things in the house and put Kylie's jungle upstairs in the living room. For some reason I wasn't thinking about how Kylie likes to put random things down the ramp. We have had many occasions where we are trying to get all sorts of toys out from the bottom of it.

Anyhow, I had to take a pic when I saw what she was putting in it this time. She put all of the animals to her farm (which is in the living room) on the ramp. It was so cute watching her carefully set each one on the little ramp. I was also excited to see that she was content with them just sitting there. Usually she gets upset when she puts something there and it doesn't slide down the ramp and out the bottom.




Here is a pic of her steady handwork setting up all of the animals just right. They really do have to be just right too. She will line them up on the stools in the kitchen or on the couch or anywhere, and they have to be upright and just how she wants them or she gets so upset. Sweet girl.




Okay, just a little blurry, but I love the smile and excitement. She was a dancing fool and I had to get a shot of that smile...often hard to do because she is always on the go.

This pic is just so sweet. Holding daddy's hand as he helps her step down. Matt says she was holding on so tight. She gets kinda nervous with new things and different surfaces. Love her!

This came out kinda neat. I tried taking the pic through the slats in the fence.

This face was just too cute. She was having fun opening the gate and running away and then coming back and doing it over and over again.

I love pics from behind...you see how little they are.

She was picking up rocks in this shot and decorating the yard with them. I'm sure her dad will thank her for that when he mows the yard.

She loves to brush her teeth! I brush them first, and then let her have at it. When it is her turn to brush I get excited and sing "brush brush brush" and I dance a bit, and then she wiggles around while she brushes. She is so cute!

Smarty Pants

Okay, so Kylie is just awesome! We are definitely blessed that He chose us to be her parents. She is so much fun and such a handful at the same time. All part of the experience though :)

We know Kylie loves the signing videos that we have been watching, and she lets us know it too. She points to the dvds that are on top of the tv, and when we ask her if she wants to watch a movie she squeals and gets all excited and does her happy dance..lol Of course the dancing doesn't stop there, she likes to dance while she watches it too.

We went out to eat at Applebee's this evening, and Kylie was getting a bit unhappy so we pulled out the snuggie and paci...desperate times cause for desperate measures. That was definitely the ticket, because she put the snuggie right to her face...she was sleepy. I also gave her a little stuffed puppy to play with, and she started to play a game with it. She covered the puppy up with her snuggie and then was peeking underneath it to see it, and then covering it up again. Something tells me that takes a lot of brain work for her to think of playing that, then to cover it up and play peek-a-boo with it. Yay for Kylie!

This evening we decided to try putting her down a little earlier for bed. We are hoping that she will sleep longer and not get up earlier...time will tell :) Anyhow, she decided to start playing after we got her all ready for bed. She decided she needed to bring me the toys that are in the storage ottomans that we have in the family room. She brought me her baby, which she is beginning to carry around a lot more and it is soooo cute! Then she brought me her ball, and I would sign and say more and she just kept them coming. I decided that before she got too carried away that I would try asking her to put them back. She did it! One by one, she put them all away.

I love her so much! Oh, and every time she sees a dog on tv or outside she signs for dog and gets really excited. She is really smart and I just can't wait to see how she responds to therapy. Something is telling me she will do just great.

Sorry no pics for his post...stay tuned and we will get some for next time :)

Movie/life review

The other day I watched a movie and it made me think a lot. It is amazing how so many things I do, or see, or hear affect me so differently now. I don't know if it because now I am a mom, or if it's because of all we have been through with Kylie...at any rate, things look much different to me now.



So what was the movie? It was My Sister's Keeper. I know, one of those sad movies about a child that is ill. I have always been touched by movies like that, but now it is much more than that. There were so many lines in the movie that really hit home....so much I could resonate with, so much that made me see more of myself and who I have become.



One of the first lines was Having a child who is sick is a full-time occupation. That is no joke. I know Kylie is miles ahead of where she was last year, but that doesn't mean it wasn't the most difficult time of my life. You can't forget where you have been, but maybe now we can try and use it as a reference to where we currently are and where we will be. But yeah, it was definitely a full-time job and more. When you can't leave your child for a second, and have to monitor them and be there for comfort, and waiting for the next seizure to record it, cry through it, and pray that everything will be okay...yeah, that is exhausting for sure.



The next was, At any moment the whole world could come crashing down. One of the big differences with IS and other illnesses that children can get is that there is no picture of what is yet to come, and what your child will go through, and where they will likely end up. So yeah, it can all change so quickly, and you have no idea what to expect...I think that is what makes it so tough.



It's hard to imagine a time before everything happened. When we were in the middle of it all, it was definitely hard to picture what our days were like before the bi-weekly doctor apptmts, the daily steroid injections, the recording of the seizures, watching and waiting for anything that looked suspicious. I have to admit that since things have gone so well for Kylie....I mean she has done so great and come so far from where she could be...that there are times we don't see what once was, but what we have now...not always easy, but going forward is all we can really do.


The daughter that was ill in the movie was looking through a scrapbook she created. When she got to a page of pictures of her mother and father, she had this thought for her father I took your first love from you, I only hope that one day you get her back. Wow, was that a powerful thought. I know I am not the same I was before Kylie, and definitely not who I was before everything happened. I only hope that one day I will not only come back, but be a better version of me...soon would be nice.


Lastly, we all know having a child changes your life...forever, but nothing like when you have a child with special needs, needs you don't yet realize because you are still learning...still going through the motions and onto the next step...rinse, repeat.


Okay, so one more thing. Alec Baldwin plays an attorney in the movie, and in his first appearance he notes that he has a service dog. It wasn't quite clear until the end part of the movie what the service dog was for. He apparently is an epileptic...how's that for irony.

Round one

I wrote this yesterday after her therapies, but didn't get it all finished until today.

Well, today was the first day of Kylie's therapies. I was wondering how well it would go, since Kylie is all over the place with this new nap schedule of hers. Some days she sticks to it, other days..not so much. She stuck to it today, which was great. Whew!

I tried to make sure to keep her thoroughly entertained, so that she would nap well before her therapies in the afternoon. Here are some pics I got of her playing with some bowls, spoons, and other kitchen items. She had a lot of fun moving them from one room to the next.

On to the therapies. I guess I was expecting things to get started right away and off we go watching Kylie grow. Today was pretty much a day to get Kylie more familiar with her therapists, and to give them some background info about Kylie and all that she has been through.

When you start talking about things, it is like you are just going through the list of what happened and when they happened. It isn't until after you are done that you realize that you just kind of relived that entire horrific experience, and it doesn't exactly sit well...not at all really. The rest of my day was pretty much blah for me. I just couldn't stop thinking about what our little girl has been through and I can't really shut off all these thoughts...I so wish I could.

Anyhow, back to therapy. Both of Kylie's therapists said it may take a couple months before Kylie feels comfortable with them and trusts them. It may be awhile before we see what they are doing and how Kylie responds to them and the work they are doing with her. I guess that makes sense, because you can't really expect a child like Kylie (who was close to me for a majority of the time they were there), to instantly feel comfortable with them and then allow them to work with her. I am just really anxious to see her reach her full potential.

We talked about some of the goals we have for Kylie and what we would like to see her work on. The language is a definite, and then having her be okay around new people and social settings, and being comfortable with new experiences. This was just a start to things, and I am sure we will fine tune it all as we get into it...can't wait for that :)

You are my sunshine

Okay so this weekend we had a bit of a heat wave...like mid 40s or so, and we decided we needed to be outside. The sun was out, so we tried to soak up the bit of light shining down on us. We got Kylie bundled up in her fleece jacket and hat, and decided to pull the bike out of the basement.

Here are some pics of Kylie kind of riding her bike (she likes to stand over the seat and walk with it as she either holds on to the handles, or picks it up by the handles while she walks) or pushing it.

I know this isn't a pic of Kylie with her bike, but she thought it was fun to touch the boxwood plant by the garage. She walked over by it a couple more times and leaned over to touch it...too cute!

Some other fun stuff, is how much fun it is to watch Kylie brush her teeth. I always brush them first, and then I let her take over and she usually just sucks or chews on her toothbrush, but the past few days she is twisting it around and trying to wiggle it around in her mouth. She also grabs her toothpaste and pretends like she is putting some on her tootbrush. I love it!

My goodness is she the little smarty pants too! She is catching on so quickly with the sign language that we are just amazed. She has words that she knows, like if she hears you say the word she will usually do the sign, but not always (thank you, eat, more, bubba, cookie, apple, candy, bread, cheese, dog, help). The ones she knows well and uses properly are: eat, more, & bubba....okay so bubba is the sign for milk, but we call it bubba. I'm sure she has picked up more that we just aren't aware of yet, but this is what we have so far, and we couldn't be more proud!!

We do have to thank the creators of the Signing Time dvds for all the help with the new signs. We have been checking them out from our library, and getting more as we find other ones that we think will help us communicate better. They are just great! Our PAT educator told me about them, and I am so glad she did :)

Oh, Kylie starts her therapies this week! We are really excited to see how Kylie does with everything. She will have both therapists here at the same time on Wed...that way they both can give some insight as to what they think will be the best plan for Kylie's therapy. We are definitely ready and eager to get started. I will be sure to update post her first therapy session.