so much more

Goodness, there is always so much more that I plan to blog about, and then I forget, and then I remember again, and forget again. I even put a notepad by the computer, and I still forget to write it down, or Miss Kylie climbs up on the chair and grabs it....because it has cats on it and then well, once the paper has been through her hands, there is no point in keeping it.



Some things have jogged back into my memory, so I need to share them before they slip away again.

So I have mentioned that Kylie and I have been cooking together more lately...my secret hopes that it will get her to eat more of the things that cause her stress a bit (anything sticky, goeey, or lately...anything new).

Last week or the week before, we made cupcakes together. She helped dumped the mix into the bowl, helped me pour the liquids into the bowl, and then helped me mix it. I was worried that the sound of the mixer would bother her, but she was surprisingly okay with it...yay!

I even let her help me hold the measuring cup as we dumped the mix into the cupcake liners....oh yeah, she helped put them in the cupcake pan too! I was happy that she didn't try to yank it out of my hand and get cake batter everywhere....I'm not quite ready for anything like that just yet.



Once they cooled, I got a can of icing and set things up for her to spread it on her cupcake. Here is some video of her doing her best to work with something that bothers her...the stickyness of the icing. You will see how she likes her cupcakes plain.



She did great trying to do it, so I was super proud of her for that!

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Not to take away from a cute, and happy time, but you probably noticed Kylie's head go back toward the end of the video. These are those motor stereotypies that have crept back into things. As far as Kylie goes, they typically happen when she is really excited or stressed. This instance was a bit of both, she was excited for the treat of a cupcake and a bit of anxiety because of all she worked up to in order to get it.



Just a few days ago, Kylie helped me make some homemade pizza dough. I let her dump more flour in the mixer little by little. As we got closer to the end, I let her scoop it out and then dump into the mixer. She did great again! She was a bit confused and bothered when the mixer started to move a bit. This happens as we near the end of the mixing process when the dough is getting thicker. Her therapist always tells us she has great coping skills and she does...she just got down from the stool to get away from it, when she got uncomfortable.



Here are some pics from that day.








So I am saving the best for last :)



Kylie is like a mini genius or something. I know, I know, every parent thinks their kids are so smart and cute...duh, they are :) You see, whenever we make a run to Target or Walmart we pass some horses on our way. Kylie knows where we are in our drive, and will start signing horse just as we are about to approach where the horses typically are. Matt and I just look at each other and say, "she is so smart!"



I think it was last week sometime, I wanted to run to a store in the mall to get something. We made sure to never mention the word mall when Kylie was around, because she knows that there is a play area there, and will expect us to go there...something we didn't have the time to do. Anyhow, we are at the stoplight before the mall and Kylie starts saying mall and play. I was absolutely amazed, because we haven't been playing in the mall play area since that incident of when some kid knocked her down. How about that...she is one smart cookie!



Oh, and the latest super Kylie instinct was us driving home from Bass Pro today. We were out that way the other day and there are railroad tracks along part of the drive home. Anyway, there were some trains parked on the tracks, so we pointed them out to Kylie. Well today, when we were heading home that way again, she started to say dooo dooo. I was wondering if she was referring to one of the songs on her cd, and Matt was like no, she is trying to say choo choo. Sure enough, she is looking out the window for trains, and doing her best imitation of a train...dooo dooo.



Absolutely love this little girl!

Here Fishy Fishy Fishy

Guest post by Matt a.k.a. Dadda.


Most of you that read this blog know that I love to fish. I sneak out whenever I can to try and catch something - usually that's a few little bass from one of the little ponds or community lakes that are scattered around the area. I've got a few spots that aren't more than 15 minutes from the house, so it's pretty convenient if nothing else.


I'm not sure why, but after I got home on Wednesday I thought it would be a good idea to take Kylie fishing. She had gone out with me in the past, but always to play, never to actually fish. I figured she's getting old enough to have enough of an attention span to last at least a few minutes! She's just 21-months old, so I wasn't expecting much. I was just hoping she'd have fun and that we'd catch something.

So we grabbed Kylie's Barbie fishing rod (thanks to Grandpa Bieganowski!), a little tackle box, and the camera bag. I didn't even bring a rod of my own, which is a big step for me!

We drove over to a little park with a pond and walked down to the water's edge. I got her all set to go, while Mom manned the camera and camcorder. More on that in a bit.

I pitched her bobber/worm combo out, handed her the rod, and...

...she absolutely lit up!

She was super-duper-excited to be fishing!

The question on everyone's mind here is "well, did she catch anything?"

Of course she did! Her awesome guide put her on a big school of fish, so it was tough not to! She managed two absolutely GIANT Green Sunfish. The first two pictures are of her FIRST FISH EVER!!!

And the second fish of her life:

She appeared to be a little upset that the fish were out of the water. She was motioning for me to put them back, and saying "wa" (water) when we hoisted our giant catches out of the water. So after a couple snaps of the camera and a few pokes by Kylie (see above picture ), the fish were returned to happily swim with friends.

She did amazing (we say that a lot) and hung out for a good 15 to 20 minutes before wanting to go walk around the lake and play at the playground. She didn't really get the whole "reeling" part, but she'd watch the bobber and wave the rod around. Good enough for her first trip!

So after she lost interest, we walked around the pond and played for a while before walking back around to where Momma was reading her book. After a few more minutes fishing there, and no more fish, it was time to go.

I was very surprised she lasted as long as she did, but she continually surprises us, so that's nothing new. I'm not sure why we're still surprised by things like this!


With my passion for fishing, this will be just the first of many future trips my little fishing buddy and I will make. Here's some video of the trip:

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yep...even more things Kylie :)

I decided to try and give Kylie a popsicle again. We have tried before, but she would get upset if it got on her and she really didn't understand how to eat it. She used to just put it to her mouth and then make a face. Now she gets it! I showed her what to do and she did it! She looked so cute eating it too!

Matt's mom was over this weekend and played with Kylie before her nap and then stayed when Kylie napped so we could get out of the house for a bit. Yay for grandmas! Kylie was very upset that she had to go down for her nap and really wanted to keep playing with grandma.

I was able to snap a few pics of them reading some books together! So cute to see Kylie climb up on her lap. Love this pic...Kylie is really concentrating. Tongue out and all :)

Kylie loves to play peek-a-boo and to hide under blankets and then pull them back to surprise or be surprised. I like how she is peeking out in this one.

Trying to uncover her dada...she sometimes calls him daddy now...comes out like da-ey.

Peeking again!

The other day we were getting ready to go to Kindermusik and I was trying to get Kylie to come and brush her teeth, and this is what I found. All dressed up and ready to hit the town! You will see she is pointing to herself, because she likes to see pics of her on the camera. Sometimes the only way I can get her picture is to tell her that I will show her all the pics of her...doesn't always work, but it is a shot.

I love how this one came out too!

I was realizing that it seems like forever since I really organized some play/therapy things with Kylie, so I decided to pull out the plastic tablecloth and a bowl of rice. Before I have given her more little bowls and a small cup to dump it back and forth, but this time I gave her a little spoon and also encouraged her to use her hands. Having her use the spoon was really good practice for her scooping with the spoon and trying to keep it steady, so as not to spill so much.

Do you see the grains of rice flying through the air and Kylie beginning to close her eyes as they start to fall down on her. She had rice everywhere! I never let her get this crazy with it, but she wasn't hurting anything and she likes to use the broom, so it was good to watch her have so much fun with it.

Note the couple grains of rice in her hair. She had some in her diaper too :)

Over the weekend I was trying to think of a snack to for us all to eat, and I thought of popcorn. I realized I had never given Kylie any before and she loves the Funky Mama song about popcorn, so I figured it would be a hit. I was right she loved it!

With that said, I decide to make her and I some the other day. I got these cute pics of her eating some popcorn while laying on the floor. She just looked so cute laying on her belly...I had to take pics of it :)

And apparently I was eating too much, or she realized she didn't want to share anymore, so she picked up the bowl and went over near the corner and sat down to eat it....by herself.

Kylie loves it when we build any sort of little forts for her, and Matt loves to build them for himself...umm, I mean for Kylie :)

Here are pics inside the most recent fort Matt built using the couch cushions and some blankets. I must note that Kylie took a bunch of book inside of it and some legos. She also insisted that Matt and I join her and play...not easy to do when you are a grown-up.

Cook...gook (Kylie says gook for cook and will sign cook)

In addition to these things, I have been letting Kylie help me bake and cook more. She will help dump things into a bowl and hold the mixer or stir something. She really likes helping out and being a part of whatever she can. I will admit, it can make things take longer but I really do love my little helper!

Where's Kylie

We got Kylie one of those backpack leashes, but haven't used it yet. Matt says he will never use it, but I like Kylie to stay as close to us as she can. Lately she has been getting it out and wanting to wear the backpack...she even says backpack and it is pretty cute too. After our visit to storytime at Barnes & Noble today, I think I am ready to put that leash to use....she kept running away and making me chase her...not so fun after the um-teenth time.

Medical Stuff

Oh, I checked with the neuro working on the IS study we have Kylie enrolled in, and her sample is not yet complete, but we should know something around October or so. They are doing lots of genetic testing, and took our samples as well to run, so we are anxious for those results too.

I emailed Kylie's neuro last night, because the head movements (motor stereotypies) have increased. They essentially went away, but last Monday they reappeared and I feel like I am seeing them a lot more. The first time I saw it was last Monday first thing in the morning, and she lost her balance and fell down, and of course that scared me.

I just wondered if it is common for them to subside and then come back or what the deal was. He replied and said they can fluctuate and it is unclear as to why this happens. So good news that it isn't abnormal, but bad because they don't know why or what it means. Can we just get a clear answer just once.

hello

I think she has been saying it for a few days now, but it was super cute this afternoon to hear Kylie say hello...it's more like "Heh..whoa" She has inherited my old cell phone and this evening on our way home from the grocery store she had it in hand and kept saying it over and over again. I told her to say "how are you" and she tried, but then smirked when I asked her to say it again...she opted out and said "heh..whoa" again :)



It was definitely great to have the cute and silly moments with her today when I was not doing so well with my worry for her.



In addition to her not wanting to be at Kindermusik this week, or at the story time today...I saw all too many head movements from her. You know, those stereotypic movements where her head goes far back, and the first one I saw today was a doosey. It was first thing this morning when she was telling me she wanted to watch a movie, her version is "mooo-ie" Anyhow, she was so excited that her head went back so far she fell down...enough to make me sick.



I know it isn't anything new, but it's like they disappeared because we almost never see them. I think we told her neuro that they have decreased at least 90-95%, and now ehhh...I hate to see it. It seems weird to say we have forgotten about them, but we kinda have. I mean, if you almost never see it, then you aren't thinking about it so much. Which is nice, because it allows you to be caught up in the moments...the good moments :) And then when it pops up it just makes you all queasy and stops you in your tracks.



I have been flipping through flash cards with Kylie and she is really doing a great job of trying to say a lot of the words that I say to her when I show her the card. I try to go through different ones, because usually after a few she is done and just wants to play, and I totally understand. The next step is seeing if she will begin using these words more. Here is a list I started of the flash cards she has repeated upon asking:



horse, elephant, yo-yo, duck, moon, goat, egg, fox, alligator-gator, heart, kangaroo-roo, bird, sun, slide, girl, boy, dress, kite, walrus, nest

here or there

So I am having trouble deciding where to blog some of my thoughts...here or there...on my new blog.

I may flip-flop until I get things figured out and then may go back and forth when I have my moments :)

Monday was Kylie's first day of Kindermusik for the semester, and it just didn't fair so well. She was really uncomfortable being there and it was hard for me to see her like that. We worked through it and she was more a part of things near the end...I just wish she could have enjoyed it from start to finish.

Today was story time at a local museum and she was pretty much the same there..so of course I am near tears and wishing she was okay with new things and new people, and wanted to be around them and not run from them.

So bare with me as I try to figure where to post what where. I want Kylie's blog to be all about her accomplishments and updates and all things Kylie. At the same time, I want to separate my ups and downs and from her blog and keep them on mine. I know they are a part of all things Kylie, but I want her blog to more of the happy stuff.

K, I am going to keep rambling, so 'til next time :)

...more things Kylie

Okay, so I had so much to put on the last post, that I thought I would save a little bit for another post....that would be this post :)




I have mentioned before how much Kylie loves to play dress up, and now she is starting to add more accessories to her style...a purse! This little purse was in her Easter basket, and she didn't seem to care much about it...well, not until a couple weeks ago. I usually put all of her little bracelets in it, when we are cleaning up from playing dress-up. She has caught onto that and has been doing her best to fit them in her purse and then she likes to carry it around. Here are a couple pics I snapped of her with her latest accessory :)

We have been to a few different branches of our local libraries, but our visit yesterday was a bit more exciting for the both of us.




You see, there is this big stuffed dog named Paige, and one of the librarians told me that kids love to give Paige hugs when they stop in. Kylie has never wanted much to do with Paige, but yesterday was a different story. I prepped her and told her that we were going to the library and that Paige, the dog, would be there. As soon as she saw Paige she was excitedly saying dog and ran over and squeezed Paige real tight! Then she gave Paige a kiss and more hugs...it was adorable to see her do this. This was a big step for her and a happy moment for me...she didn't want to let go and just kept holding on to Paige so tight!



Sorry, no pics of that...I was too busy enjoying the moment, but I did get a couple cell phone pics of her playing during our library visit.

Kylie coloring

Fishing magnetic letters out of a bucket

Playing with dinosaurs. She either had them all on the rug, or all off the rug...oh, and here you can see that they all went ni-night when she laid them on their side :)

Another big moment for Kylie was last night. So she loves ice cream, and for some reason she gets so stressed and worked up when we try to give her some at home. One time I got a big bowl and figured the two of us could share it. She literally melted down and it was hard to help figure out what was wrong and why it was too much for her. I thought maybe she wanted her own bowl, so that is what I did the next time we had ice cream. Same thing. She wanted it, then screamed and tears were flowing and it was just not a good thing.

Last night was very different. She went right over to her bowl and put a spoonful in her mouth! No stress, no tears, no unhappy moments....just a little girl enjoying her ice cream. I love that she was finally able to enjoy it and not let the stress of it overcome how much she likes it. Way to go Kylie!

Lastly, we went to the craft store today and she found the section with all the prestrung beads that are used for jewelry making. At first I was thinking okay, please stop touching all of them and let's go. Then I realized that she liked how they felt and that was why she had to touch them all and then go back through and find the ones she liked better. Once it clicked with me, I just let her go up and down and touching all of them and letting her hear the sounds of them all clattering together. She loved it!


Amazing how many things you can discover for therapy when you aren't even looking :)