Ohio....Outdoor fun, and picture party

So after some naps following Kylie's neuro apptmt...it was time for some fun outside. My parents have a giant back yard, and Kylie loves to run around it. Just look how far back her and Matt were from the porch....this was with my camera zoomed in as far as it would go.

Kylie and Matt racing back to the house...Kylie with a giant flower in hand.

She LOVES to smell all flowers!

She is off to run some more....LOVE, LOVE this pic!

Playing on a little bridge in my parents yard.











Getting all wet in the well/fountain they've got out front.

Reading some books with Dadda....I love seeing them together like this!

The following morning, we decided it was time to do some swimming. We put the ball pit inside of an inflatable pool and filled it up with water...Kylie absolutely loved it!

She loves the Elmo bathing suit Grandma Karen got her!

A little wet footprint

Sharing some giggles with Papa Joe

Okay, so I was having tons of fun on Picnik, doing some editing the pics I had taken of Kylie running around the yard. Some of the pics are repeats from the beginning of the post, but others are not...love them all!

Matt was with me, and told Kylie to put her hands on her hips...she decided to strike a pose of her own

Here we go...hands on the hips now :)

Kylie and her Dadda

My all time favorite...

Ohio Part 2....Bath fun and Neuro Visit

My mom had bought Kylie a ball pit, so we decided to take all the balls out for Kylie to play with them. It was not too much later before bath time rolled around, and Kylie had some ideas of what to do with all the balls...100 of them at that!



Matt was getting the water started while Kylie loaded up a purse with some balls, and then dumped them in the tub. Matt said no more, and told Kylie to get ready to get in the tub.



The next thing we see is Kylie coming back with an empty purse, full of giggles, and loading it up again to dump it in the tub. She contd to do this until she got all of them....I have no idea why I didn't get some video of this....I was too busy watching her giggle like crazy and loving every moment of it!



Below is a video montage with some pics of Kylie in the tub, and a little bit of video too. Enjoy!

On to the apptmt. I wanted to be sure to get some pics of Kylie by the fish tank and a couple others to compare to pics from previous visits. Click here for last years visit.

She just looks like such a big girl here!







Family pic with Dr. Ghosh

(We had just given Kylie a sucker for doing so well. I think that is all it took for her to allow the doctor to hold her for the pic...why didn't we think of this sooner)

After the apptmt, we went to find the tree that they have projected on a wall downstairs in the building adjacent to ours. I love this tree, I think it is really neat, and just kind of beautiful to watch the image dance on the wall. Below is a video of Papa Joe helping Kylie climb the tree, and then of Kylie and Matt racing in the tunnel that leads to the parking garge. So cute!

Photo and video editing at www.OneTrueMedia.com

Needing to do one more checkup with the help of her doctor bag as we were leaving.

Dr. Daddy checking Kylie's heart...yep, it's full of love!

Touching the water display out front...just like last year :)

We found some Monsters Inc. friends at a stop on our way home.

Sleepy Kylie

I decided to let you all enjoy the pics and video, while I keep you in suspense about how her apptmt went :)

Okay, so we had my dad come with us so he could see where he had to go to take my mom up to the Cleveland Clinic a couple days after Kylie's apptmt. Also, I wanted him to meet Kylie's doctor and see what doctor visits are often like for Kylie and us.

Well, I think Papa Joe was a good luck charm, because Kylie did absolutely AMAZING! She usually starts crying the moment they call her name, and it's just a meltdown from there on. Kylie was such a big girl and stood on the scale and up againt the wall to get her height. I know this may not be anything big to most, but this was a HUGE step for Kylie. She was AWESOME!

She did extremely well all throughout the apptmt...she had tears welled up in her eyes, but she held it in and never let the tears spill over. Not even when the doctor took her head measurement and did the physical exam. She is really growing up!

The doctor was very pleased with how well she was doing, and all the growth she has made socially. He still thought she was shy, but that could just be Kylie and nothing more than that.

So what were his recommendations?

NONE

Yep, he said he has no recommendations and told us to keep doing what we are doing!

Below is literature from his official report:

In summary, Kylie is a 30 month old girl with history of infantile spasm, treated with ACTH with no further recurrence of any form of seizure, so far. She developed features suggestive of milder form of autistic spectrum disorder, now improving in all parameters on appropriate intervention with behavioral training, speeh therapy. Speech is normal now. Stereotypies improving. I suggest continuing same management, prognosis seems good.

Hooray! We kind of figured he would be pleased with her progress, but we had no idea he would say "No recommendations." It was later that night when I realized that we were so elated with his comments that we never asked him any questions....oops!

So I emailed that evening. I asked the question that is hard for any parent to ask and more so for a doctor to answer, but I just had to...here goes:

Based on both the cases you have seen throughout your profession and with our visit today, do you feel Kylie will lead a typical life, or may have some issues down the road? I understand so much of this is a wait and see type of thing, but I worry about her, and any extra information or perspective you can give me will help me out.

His response:

No one can guarantee but it seems that Kylie will lead reasonably good quality of life if no new problems crop up and if appropriate behavioral/educational measures are taken.

Isn't it funny how their responses are so much shorter than our questions? Anyhow, I was so excited with all of this. And Matt was too....so much so that when we woke up he turned to me and said "Do you want another one?" WOOHOO, it is about time!

So who knows, maybe sometime next year we will see about Kylie becoming a big sister :)

Ohio...Part 1

We went to Ohio the end of June for Kylie's follow-up with her neuro at the Cleveland Clinic. We were planning to drive there on a Friday, but Kylie and ended up flying out on a Tuesday, while Matt headed out Thursday night. My mom had a heart attack the beginning of May and was also scheduled to go to the Cleveland Clinic for a consult....our early departure was so we could spend some extra time with Grandma Karen.



Here is a super cute pic of Kylie and Grandma Karen resting together on the couch. Kylie is not one to cuddle or lay down unless she is in her bed to sleep, so I knew I had to snap a pic before the moment was over.

My mom had lots of fun shopping for Kylie this Spring, and had so many clothes for Kylie when we got there. Here is a pic of Kylie in her cute ballerina jammies. She looked so cute in them! She even did her ballerina dance for us :)









Kylie and I went to the store with my dad one morning, and she did really great with letting him get her out of her carseat, and it was so sweet when I looked up and saw her holding his hand as we were walking in the store...of course I snapped a pic of it....and then did some editing and came up with this:







I'm not sure if Kylie will be much of a girly girl or not...she loves climbing and running around, but also loves to wear dresses and pretty shoes. Anyhow, she started letting me paint her nails. Okay, so I had to bribe her to do it the first time...one jelly bean per finger. Don't worry, she only had a few before I was able to get away with having to give her one every time.



My mom has like every color of nail polish you could think of, so Kylie was definitely enjoying that. She kept saying "pick a color" so she could pick out a new color or nail polish....she seriously wanted a new color every day. Below is a pic of my mom doing her nails.







Since I have been gone from Ohio so long (almost 12 years...holy cow), I don't remember where to go when we are there or how to get anywhere. An old friend for high school told me about this indoor play place called Skedaddles so we decided to check it out. Once, again, my sense of direction is not so great, so since we got there a little later than planned, we were not able to do the craft activity they had going on, but were still able to play.



My sister met us there, so we all got to spend some time playing with Kylie. I think Kylie had a good time playing, it is definitely a cute place for kids to play.



Here is Kylie playing inside a little house they had...she loves things like this!

Weee...going down a slide!

I thought this was super cute. It has a bunch of these little bike type of things, so a few kids can play on it at the same time, and when they pedal it makes it move and they go around in a circle. I seriously think this is what helped Kylie learn to ride her bike. She has been able to go backwards, but once we got back to Kansas, she was going forwards!









Whenever we go to Ohio we always get some yummy food! I think it was the first night Matt was there, we went out to dinner and then stopped at Handel's for some ice cream. You seriously have to go here if you are in the area, because it is sooooo good! I sampled the twixter flavor, which was cookies and caramel...totally tasted like a Twix candy bar. I still got my standby favorite...mint chocolate chip.







Kylie saw the Dora popsicle and had to have it. Here is a pic of her all ready to eat that yummy treat! Doesn't she look cute in that dress...courtesy of her Aunt Jen :)









I swear Kylie eats more food on the drive home whenever we eat out somewhere, than she does in the restaurant. So after eating our ice cream at Handel's, Kylie asked for her food. Here she is eating a giant onion ring...I have no idea why, but she loves onion rings! She also likes to say they are "worms"...I guess they kinda look like them when the breading is off of them, and then she laughs and says she is eating worms....so gross.







We also had a chance to meet up with an old friend of mine that I have been friends with since as long as I can remember...you know, the kind that you played in puddles with in the summer after it rains.



Well, Karen invited us to come to a wine tasting...and yes, we took Kylie :) They are totally family friendly and welcomed kiddos, so it was great. We had a bit of a time navigating our way to the location...got stuck in a parade, and some GPS issues that said roads were there that didn't exist, but we made it there!



The owner of The Cortland Wine Cellar, Sheila, had brought Kylie some paper and crayons, and a tic tac toe board to play with before it was time for the dinner they were having....see kid friendly :) She later brought Kylie some grape juice and a miniature little glass to drink it out of...it was so cute & she did great drinking out of it. Of course we had to take pics, because if you didn't know any better, you would think she was drinking some wine.






They had a live band playing the night we were there, so here is a little video I shot of Matt and Kylie dancing and being silly...I think they were doing "The Twist."

Make video montages at www.OneTrueMedia.com

My friend, Karen, and Kylie playing outside. Kylie was making a silly face, but I thought Karen looked so pretty.

A pic of the 3 girls....yep, a bit of fun editing too...I thought it came out pretty cute!

Karen's boyfriend is a videographer and he and his co-worker were doing a story on The Cortland Wine Cellar the evening we were there, so please check out the footage they got that evening. Oh yeah, Kylie has a cameo appearance about 2:11 or so in the





Once we got home that evening, we noticed that Matt, my dad, and brother were all wearing the same shirt...so yep, picture worthy, with my dad making a silly face for the pic:







Just before bedtime, Kylie was playing with her Uncle Joey. She did such a great job warming up to everyone and it was so wonderful to see this. At our last visit, she didn't want to give hugs to anyone, but this one was different...she gave hugs a lot when we would ask her to give someone a hug to tell them goodbye or goodnight.

The next morning we got to meet up with another friend of mine, I have known her since the 6th grade. She invited us to come with her family on their boat, so that was great to just relax and enjoy the time on the water with some friends.

Here is pic Matt got of Kylie and I...as you can she was rather not so happy. We had quite the meltdown getting the life jacket on her...oh, how the sensory issues are not so pleasant. After being on the boat for a little bit, she did great and really seemed to enjoy it.

...still a little uneasy here, but getting better.

My friend's beautiful little girl!

Kylie playing with her new friend.

A pic of my friend and I just before we left. I know she is so cute and tiny...maybe one day I can grow up to be just like her :)