Another funny thing that we captured this weekend was a pic of when we went out to lunch on Sunday. We went to get sandwiches and broke up Kylie's for her, but she wouldn't eat it. She started to reach for the other half of her sandwich, so we decided we would let her have it if she really wanted it. Oh my goodness, it was so cute to see her holding onto half of a sub and trying to eat it. Once again, she would not let go it once we let her have it. All the people there were laughing at how cute she was trying to eat this big sandwich. Here are a couple pics we snapped with our phones. She ate about half of it in total, and set it down when she was done eating it after we got home. Let's just say it took her a long time to make some progress and get some good bites, but it was sure cute to watch her!
Tuesday, March 30, 2010
Friday, March 26, 2010
Sometimes, I think we don't always see how fortunate we are...until we see another story of child with IS. It really makes you think and appreciate those little moments...life for us in definitely in all the little things that make everything else so grand.
Not many families with a child with IS can ever say there is a day that goes by that they don't think or realize they have a child with special needs. It is often so evident with the rigorous therapies and daily routines they have to modify, and it is those things that are reminders of how life is so different for them...different than they imagined it would ever be.
Once you get into your new way of doing things, you realize this is your normal and it is all you know. Maybe that is why we have times when we don't think of Kylie as a child with special needs, because we are used to our normal. I think a bigger part of it is because Kylie has exceeded so many expectations and defeated many odds. So much of what she does is very typical, but other things are not.
This past week was quite busy for us with apptmts and therapies and visiting old friends and so on. It was in this week that we also did some new things out of what we are used to doing...it was in those things that we had the reminders of the fact that things are different for us. I guess it has been so hard on me these last few days, because I was in another realm of sorts where I have fallen into the idea that Kylie is like every other little kiddo out there.
I still have big dreams for Kylie and I want the world for her. She is an amazing, beautiful, sweet little girl and I just want her to have the same opportunities as every other little kiddo out there. Now that we are doing more activities out of the home we are embarking on so many new experiences, both for Kylie and us as her parents. So yeah, this has been revealing a lot of the areas that we need to work on with Kylie. Everything is just weighing so heavily on me, because I want to see her blend into the pack of kids, and not have to explain the whys and everything about Kylie's journey. I just want her to be a kid...no questions asked and no history to tell.
Kylie is paging me right now...she is babbling away, and ready to be up and out of her crib. We are off to go play outside now.
Thursday, March 25, 2010
With that said, I have put a couple of my necklaces on her and it is so cute because she quickly tries to move to see herself in the mirror, and then she smiles so much when she sees the pretty things she is wearing. A couple times a day I ask if she wants to play dress up and she gets so excited. One of her favorite things is to have a silk scarf wrapped around her neck. It is the one thing that she never tries to pull off.
Just yesterday she started really looking at herself in the mirror when she is playing dress up and making faces at herself and laughing. It is the best ever!
Here are some pics I got of her the other day. You can see her with my headbands on her head and some jewelry. Sorry for the runny nose she has in the pic...she's still as cute as can be :)
Tuesday, March 23, 2010
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.
Sunday, March 21, 2010
Friday, March 19, 2010
This one, just shows a better shot of her with all her friends.
Sunday, March 14, 2010
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.
Friday, March 12, 2010
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.
Tuesday, March 9, 2010
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 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.
Saturday, March 6, 2010
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 :)
Thursday, March 4, 2010
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.
Wednesday, March 3, 2010
I wrote this yesterday after her therapies, but didn't get it all finished until today.
Monday, March 1, 2010
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!