All things Kylie

Okay, so now that I have completely all my posts about our trip to Ohio, I need to get caught up on well... All things Kylie.



I try to keep a notepad by the computer so I can keep track of things, but then I forget or Kylie finds it and tears off the pages and well I just can't seem to keep up. I can't necessarily say that is a bad thing....it is really something great! I'm thrilled that Kylie is doing so much and so many new things that I am having trouble keeping track of it all :)



In no particular order, because I can't seem to remember what happened first...here goes:



Songs and Dancing

Now there is a chance I blogged about this from our Ohio trip, but I can't recall and well, I'm just too lazy to go back through and check :)



Anyhow, sometime when we were in Ohio Kylie was trying to do Pat-a-Cake with me. When I would say "pat it" and then do the motion for it, she would try to do it, and then the same with "roll it" and so on. It was so cute, but of course she stopped doing it with me once we got the video camera out. Camera shy I suppose.



She also does some of the moves for one of our favorite Funky Mama songs, Down Down Baby, and lately she has been on a Funky Mama craze. Whenever we are in the kitchen, she will let me know that she wants her music on, so I play her CD and we just dance away...love it!



But yeah, tonight she was doing a great job with Pat-a-Cake and was remembering what to do, and not just waiting for me to lead her through it! How is it that we are so blessed with this amazing little girl?



Not only does Kylie loved to dance around, she has definitely found a love for Jumping! She even gets off the ground a little and it is cute to see her hopping all around.



Her latest jumping fest has been her trying to jump off the couch....yep, something that definitely makes us cringe, but she just keeps trying to do it. Don't worry, after she did it the first time, we were quick to pad her landing zone with some pillows. Then today, she tried jumping off the steps when she was two steps up....before we know it she will jumping out of her crib.



Chatter box

Back in February, when Kylie first had her speech evaluation, the speech path gave us 4 sheets that describe Speech and Language for children with varying age ranges. I had posted it on our fridge and would happily check off the things that Kylie was doing.




I think it was just before we went to Ohio or maybe even when we got back, but I was so excited to see that I was able to finally check off the last couple things on 2 of the 4 sheets! She has really come a long way in what seems like such a short time.



So that leaves us with 3 things to check off on the sheet for the 18 month old, and then most of the sheet for the 2 yr old. Yay for Kylie!



In addition to that, she is just adding more words all the time...and I am a bad mom for not keeping track as well as I used to. I am going to try and blame it on the trip to Ohio...there was just so much other new stuff going on that I struggled to keep up with all....how's that for a good excuse :)

She has really taken off with just jabbering and talking in her own little language. She is pretty much talking all the time, and the last couple of days she has really tried to repeat the words that we say to her. It is really exciting to hear so much more of her little voice!



The most exciting news about her talking and all of that is she has progressed so quickly with expanding her vocabulary that today ended up being her last day of Speech Therapy through the hospital! Kylie's speech path gave us her email, so that if anything comes up or if we have questions, we can contact her.



Mommy's Little Helper

Kylie has become more curious about pretty much everything and she is not really as hesitant as she used to be when it came to exploring new things. With that said, it is safe to say that she loves to be a part of everything we are doing, and it is fun for us to show her ways that she can help.

For some time, Kylie was pretty much terrified of the vacuum cleaner and would just meltdown if she saw me get it out or if I ever tried to vacuum. So I had to either vacuum while she was asleep or when Matt was around, so he could keep her occupied.

I am happy to say that Kylie is overcoming her fears of the loud machine and has even tried to help me. You see, I took the vacuum upstairs and she started to get upset, so I asked her to help me. She was nervous but wanted to and then didn't want to, and then wanted to :) She had fun trying to push it around and did not want to give it back to me! She definitely prefers the little handheld one, because it isn't as loud and is more her size.

I got some fresh green beans the other day, and I thought it would be a great thing for Kylie to help me with. After washing them off, I put the bowl of beans, a small trash bowl, and then the pot to cook them in on the floor. I then showed Kylie how to break the beans in half and to throw them in the pot. After I snapped off the ends and sorting through them, I would quickly pass them off to Kylie and she would snap them in half and throw them in the pot.

Sorry, no pics of this, but she loved helping and I'm no therapist, but I'm guessing it was good for some fine motor skills with her holding the beans the right way and trying to snap them in half.

Then the next day I was working on a dessert to take with us for our dinner with the neighbors and I had Kylie help me with that too :) I was making dirt cake, so I had Kylie drop the cookies into the food processor and then I let her push the button to grind them up. I was worried the noise would make her stressed, but I was sure to just hold it for a couple seconds the first time and then I laughed at how funny it was to see them get all chopped up....that really helped her adjust to the new sound.

Sensory stuff

I was cleaning out the hall closet a few days ago, and I came across one of those foot spa things, to soak your feet in. I figured I would just put it in the basement and add it to the giant stack of things to donate or garage sale. Anyway, Kylie decided to see what I was doing, and tried to stand in it. I was really shocked because the bottom of it is all bumpy and pokey-like.

So instead of putting it in the basement, I decided to set it aside for a bit of sensory therapy. I have heard many times that it is good to have little ones barefoot, and let them feel different textures on their feet to help with sensory development. I laid down some towels, because well....Kylie loves water and I figured some would be lost if we were trying to do some play therapy. I filled up the foot spa with some warm water and then I turned it on and let Kylie see the bubbles come up....of course, more giggles from me to help ease her into the new sounds she was hearing the new experience.

Kylie had fun turning it on and off and then trying to touch the bubbles that popped up when it was turned on. She wasn't so interested in putting her feet in it when it was turned on, so I did it to model that it was okay and kinda fun to have the bubbles tickle your feet and rub them on the bumpy bottom. Before I knew it, Kylie was trying to stick her feet in with mine. Once I took my feet out she kept hers in and started signing and trying to say "bath" and then she tried to sit in it. She is so cute and silly!

This next step with her sensory development had me soooo excited! Our super neighbors had given us some muffins, and Kylie was definitely interested in trying one. I gave her one later that day, and to my surprise she picked it up off of her plate and then mushed it in her hand. I seriously could not believe what I was seeing...Kylie does not like anything messy and gets upset when there is something on her hands, even water.

Of course, I ran downstairs and grabbed the camera and just started snapping away. It was cute to see some of the faces she was making, and how she kept doing it. She was definitely interested in how it felt and how she could mash it with her hands. She also picked up some of the pieces to eat. I'm sure she was amazed that she could play with her food and eat it too.

I never thought I would be excited for my child to play with her food and to want her to make messes. I'm more amazed at how well I am dealing with it....we are both growing together in all of this. Who knew there was more for me to learn in this life :) Just kidding, I know I have a long ways to go...just never thought someone so little could teach me so much about myself and how I now view things in life. She has already changed the hearts of so many...I just know she is destined for greater things :)

O-H...I-O (last segment)

We ended up extending our trip to one more day, and it was definitely worth it! You see, my brother and dad and into drag racing and not only does my brother race, but he and my dad help out another guy on his pit crew.





Anyhow, there was a big event going on at Summit Motorsports Park in Norwalk, OH on the day we were supposed to leave, and they really wanted us to attend. My mom got the night off of work and we were able to get our return flight changed at no extra cost...wow, that doesn't happen often!





My brother was scheduled to take his car down for qualifying just after 9am, and we made it there in time to see him go down. Kylie stayed in the RV with my mom, watching her Elmo movie and Signing Time dvds and eating lots and lots of cookies. It is so true that grandparents fill up the little ones with sugar and give them whatever they want...it's pretty cute too! I love how much they enjoy her :)





So yeah, we got to put our names on my brother Joey's sheet for the race, and I didn't hear it, but my dad said they announced us as part of his crew...yep, we are big time :) As we were getting closer to Joey racing I was all teary eyed and so nervous. Joey has always been a hard worker and a good kid, so I was really proud to see him do something that he loves so much and do so great at it. At the same time I wanted him to be okay.





Sorry, I know this blog is supposed to be all about Kylie, but there were some moments I experienced through all of this that I hope prepares me for future moments with Kylie. I kinda feel like I can imagine what my parents felt as they saw their son race and have him be a part of something that he enjoys and that makes my parents worry a lot for his safety. Just the excitement, and being a proud parent, yet wanting to protect them from so much, and wanting them to be safe and happy, and treated equally. Just lots of emotions were going on for me in our last day there.





So here is a slideshow of pics of my brother and his car, and a couple pics of Kylie either with Matt or dancing in the RV and playing with the dog and Papa. And for the car enthusiast, here is a link to the video Matt took when my brother raced that day.

We also got a chance to take Kylie to an area that they had set up for kids. She absolutely loved jumping around in the bounce house! So much so, that she screamed and cried when we took her out of it. Matt and I were in there with her at different times, and I will admit that it is pretty fun to jump around in them. Most of the time she was in it, we were the only ones playing in it, so that was kinda nice for her to have the new experience without too much stress from being around new people.

The only downer was that you could still hear a lot of the noise from some of the louder cars (especially the Funny cars), and every so often it would scare Kylie, but it didn't last long before she was bouncing around again. I was really proud that she was able to let her excitement and fun for the bounce house overcome the noises that scared her. She is just growing up and doing so well with coping with her sensory issues! She is truly an awesome little lady.... she will forever be our baby :)

Here is some video and pics of Kylie having a great time playing and bouncing around during our last day in Ohio.

Photo and video editing at www.OneTrueMedia.com

I just want to give a big thank you to my family for everything they did for us while we were there with them. It was by far one of the best visits I have had! I know Kylie has a lot to do with that...she has changed so many lives and hearts from the moment we knew we were going to start a family. She is an amazing little girl and she has blessed us in more ways than we ever thought possible!

Kinda funny how differently you look at life not only when you have your own children, but when you have gone through the unthinkable, the I didn't know this was even possible, or the I don't know if and how we will ever get through this. Nothing is the same anymore, but so much is better and has more value and meaning to life. I think...I know, that we have more to treasure and celebrate because every little step or hop (Kylie loves to hop and jump around all the time now) Kylie makes is more like leaps and bounds beyond belief.

We knew she was a miracle and if we didn't already know and see that...her doctor reminded us of that when we saw him. He knows she is doing great and we know how blessed she has been...we have all been through her.

Who knew someone so little could touch so many lives and inspire us to do more and be better for her and ourselves and everyone around us. Okay, I need to stop there or I will go on and on and probably lose most of you. Perhaps I have already..I'm good at that :)

O-H...I-O (Part 4)

I know, I know...I was on a roll with updating the blog with all the details from our trip to Ohio and then I just kinda burned out...call it blogging overload or something silly like that.



At least I made it through the best post of all, the one with all the cool stuff from Kylie's apptmt with her doctor :)



I am going to try and get through the rest of our trip by this weekend...try is the operative key word here :) Sorry, I have just been really worn out lately, and hope that it is just a temporary thing.



So this post is going to be more video and slideshows than just pics, because I had so many pics that I liked, and it would have taken forever to upload all of them.



After a day of rainfall, we went outside and that is where I decided to teach Kylie how to jump and splash in puddles. Kylie caught on so quickly, and really had fun jumping in the puddles. Afterwards, she decided to take a little break and walked to the end of the driveway with her dada...this is where she decided to start waving to every car that drove by...it is so cute to see her kind of squat and look down the street to see if more cars were coming.



You will notice that Kylie is sporting a super cute t-shirt courtesy of Bobbie & Felicia (from Matt's work). The shirt has a cute little monkey on it with a suitcase and it says "That's It!! I'm going to grandma's!" So fitting for our trip to see grandma and grandpa. They also gave Kylie a matching bag with a monkey on it, and some bowls and spoons for snack times. She has definitely had her share of ice cream in the bowls. In addition to all those goodies, they gave her a cute little blankie that she has been using to cover up her Elmo doll and babies when she puts them down to go ni-night. Sooo cute! Here is some video that relates to the above info:

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Our neighbors had ordered Kylie this adorable ruffled yellow dress and it came in just in time before our trip to Ohio. I know Jessica was excited to see pics of Kylie in her dress, so I was sure to text her a picture of Kylie in it, as soon as I got her dressed! I took tons of pics of Kylie wearing this dress...and the little flowers in her hair that I made....however, they didn't stay in too long, because she liked playing with them.



Anyhow, Kylie looked adorable in her new dress and refused to wear the cute black sandals that we searched forever for to go with her outfit. I tried to tell her that being a girl isn't always glamorous and sometimes painful, but she wasn't having it...lol I tried :) Feel free to click this link to the website that features the Peace-Of clothing line that Kylie is wearing. Jessica's aunt and 2 of her friends started the clothing line and they are located in Michigan. You are welcome to contact Jessica for an order by emailing her at jgreene226@gmail.com



When we got Kylie outside after getting her all dressed, she took off her shoes and started running around in my parents giant back yard. It was so cute seeing her carry her sandals and running so free! She is just amazing...as you all know, I can never, ever say that enough!



Here is another video with some of the cute pics I captured of Kylie and some video of her running around with Matt and her Papa, and chasing the dog. You will note that Kylie is wearing shoes at some point...she had enough of being barefoot and we aren't used to letting her be barefoot either....you know, we (yes..we, Matt is too) are kinda OCD :) Anyhow, the video is simply beautiful...moments we never thought of, but loved every bit of them!

Photo and video editing at www.OneTrueMedia.com

Not too far from my parents house was a place that was a combination between a petting zoo and a regular zoo. The name of it is Noah's Lost Ark and Animal Sanctuary. It was a neat place where they take in exotic and endangered animals that have been neglected or abused. It was kinda sad to read their stories, but nice to know that they know are in a safe home. They had all sorts of animals from goats, to zebras, and tigers, and emu...just lots of different species that you wouldn't expect to see unless you were at a zoo.



The nice thing about it was that they had wagons that you could rent...well, for those who have children that will actually go in them. Kylie was having several moments, and we know it was because she was so tired and it was getting to be past her naptime, so she pretty much refused to ride in it, but did enjoy pulling it around. Since Kylie loves goats and other animals that she can feed, she loved trying to get close to the goats and feeding them, and then just trying to touch them.

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I think I just have one more post to go in order to get all caught up on the happenings from our trip to Ohio. It may be a long one, so give me until like Friday or so. And Bobbie, these posts are for you...sorry, to keep you waiting :)

Follow-up Visit with Dr. Ghosh

I know you have all been on the edge of your seats waiting for this post! It was hard for me to not make it the very first post from our trip to Ohio, but I had two reasons for holding out: 1) I wanted to build up your anticipation 2) I am just a little too OCD and had to put things in order :)


Our apptmt was in the late afternoon, so we put Kylie down a bit early for her nap and then had to wake her up so we could head to Cleveland...it's about an hour away from my parents.

Here are some pics we snapped with our phones of Kylie on our drive.

Preparing to read her Princess book.

Clapping and cheering during the drive.

Digging into some Goldfish...she had to have the bag, and not just a little container with a few in it. She just needs to have some control....hmmm, I wonder where she gets that from :)

Reading a book in the waiting room.

Reading through her social story book that we created for the trip. We made sure she saw Dr. Ghosh's pic several times before meeting him that day.

Trying to open the cabinet below the fish tank. Just sooo curious!

In the middle of playing musical chairs with dada. She went from one to the next.

Staying close to dada with Snuggie and paci...best comfort items for Kylie :)

A bit of a paci smile here after Dr. Ghosh was talking to her. She warmed up to him so much better during this visit. She has improved leaps and bounds with the social stuff..way to go baby girl!

So what happened with the apptmt?

We more or less told the doctor how great Kylie has been doing and he was definitely pleased. He was excited to hear that she has close to 50 words, as opposed to the zero words she had 6 months ago. He could tell that her social anxieties have decreased quite a bit, based on how well she received him when he came in the room and upon his examination.

He seemed bothered that she signed so much and wanted her to drop the signs. Funny, because the speech pathologist is okay that she signs and says the signs will drop as she learns more words. And that is true, Kylie will either sign and say the words she has together or just say the words without the signs....just part of the process.

He did say he thought Kylie may likely have a very mild form of autism due to the social stuff, but that it can be managed.

He also mentioned that he thought the sensory and autistic-like features are unrelated to the Infantile Spasms, but knowing that Kylie had abnormal brain activity and seizures for a month, makes us believe otherwise.

I then asked the tough question as to whether or not he believed Kylie could or would lead a fairly typical life, since most kids that have had Kylie's history of Infantile Spasms have difficulty with so many things. I told him that I know she is still young and it may be tough to tell at this point, but I still wanted to know what he thought.

His response:

Yes, she should lead a typical life and she may just be shy with some things. And for us to continue to educate her and expose her to as many things as we can, so that she will know what her limitations are.

So that was definitely every bit of a great response!

I know it also means a lot of work ahead for us and showing her what is and isn't appropriate in all senses, but to know that we can help her have a typical life is so exciting! I am trying to remain a bit low-key on this...not that I am not just overwhelmed and jumping for joy, because I am. But because I don't want it to seem as though I am so hung up on whether or not she will be able to lead a typical life. We love Kylie more than anything in the world and will readily accept her as she is and will be.

I was worried to ask the doctor that question, but also wanted to know what his medical opinion was at this time. Matt is nervous about me posting the doc's response to my question, so I asked him if he wanted me to change it or whatever....he said no, and that he just likes to worry. He really does....I told him he needs to take a permanent leave of absence from his gig of worrying :)

Here is what the paperwork shows in her chart. I'm not sure if this is the final report from our visit or if there will be more to come. We waited after our last visit to get all we needed from him, but at this time he had no new orders for her. He said for us to just continue all that we have been doing.

****************************************

Okay, back to her chart:

Visit Diagnosis:

Stereotypies (Primary), Autistic Spectrum Disorder

Impression:

In summary, Kylie is a 20 month old girl with history of infantile spasms, 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, speech therapy. I suggest continuing same management, prognosis seems good.

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Once the visit was over. We asked doctor Ghosh if we could have a picture of him with Kylie and well, there was no chance Kylie would let him hold her for something like that, so here is a pic Matt snapped of me holding her with Dr. Ghosh.

They have this really neat image of a tree blowing in the wind on a wall downstairs in the clinic near the reception desk. You can't tell from the pics but it is really peaceful and just beautiful watching the image dance across the wall. Here are some pics of that:

Outside of the clinic was this really neat water display. It looked like a giant donut shape that had water flowing over the sides and it was so pretty. We had to get close and touch it and take a couple pics.

Note: Matt is not that wide...the shirt is deceiving, oh and we all know that the camera adds ten lbs.

You can kind of tell by the blurred feet that she was running and hopping around in this pic. There is a tunnel that connects from the parking garage to the hospital and it was pretty empty...last time there were tons of people walking through it. This time it was so open that Kylie just ran free through it, and loved it!

This was just a neat mosaic that was on the wall as we headed to the parking garage.

O-H...I-O (Part 3)

I'm not sure how I missed adding this picture to the last post. Kylie is off and on when it comes to whether or not she wants to wear anything on her head of face. But when she is on, she is totally on and it is super cute and fun! Funny thing was that she didn't quite have the sunglasses on all the way, so when she walked they would bounce up and down on her face and she thought that was absolutely hilarious! It was too :)






While we were in Ohio my dad had mentioned that he knew a few people that had horses, and I told him I really wanted to take Kylie to see a horse and maybe even try and ride one. So the one day that Matt hung out with my dad and brother they were at the race track....they are into drag racing. Well, Matt met one of the guys that my dad knows with a horse and he said for us to stop by so Kylie could meet their horse, Sparky. We took him up on his offer and have a few pics to share.


I must also add that when Kylie first saw the horse, she started signing and saying dog. Of course we all laughed because it was super cute! We were kind of surprised because she always signs horse when she sees one in a book or around where we live. Oh well, I guess to her they just look like really big dogs in person.

She did not want to touch Sparky.

Oooh, she finally gets brave and tries to reach out to touch the horse!

Thinking about touching Sparky again!

She sat on the horse long enough for me to snap the picture and then wanted off immediately.

Sparky was such a sweet horse and I learned that the spot right between his nose is soooo soft!

Our horse friends had an old car in the loft of their barn, and they brought it out for Kylie to ride. She loved it more than the horse! They referred to it as the Flint Car, and rightfully so, because it looked just like a flintstone car. It has been in their family for years, and I would love to get one like it for Kylie....I mean, wouldn't she be so cute as Pebbles for Halloween!

I have created a few different video montages below with a mix of video and pics. The first one is Kylie driving around in the Flint Car. You will see why I think she needs to have one :)

Make photo slide shows at www.OneTrueMedia.com

When we were at the baseball game we got Kylie to cheer a bit, but we only got the video on Matt's phone and well, you know the quality on those isn't nearly as great as the real thing. Anyhow, we tried to get her to cheer again the next day...it wasn't her best, but it was still cute :) So the next set will show her cheering and some pretty cute pics of her coloring and having fun with momma and dadda.

Make photo slide shows at www.OneTrueMedia.com

My brother has a golf cart that he uses when he is at the race track, and we thought Kylie would enjoy taking a spin on it around the yard. We were right about that...she loved it! She kept saying "mo" and signing more to let us know that she wanted to keep driving it around. And of course we have pics and video of that too! I told you I took lots of everything :) Enjoy this next montage.

Make photo slide shows at www.OneTrueMedia.com

One night we got to meet up with one of my long time friends, Karen. I have known Karen as long as I can remember. We grew up as little kids together, splashing in the puddles in our bathing suits after a rainy summer day. It was so good to see her and catch up a bit. She had a good time making silly faces at Kylie and getting her to smile and get a bit closer to her.

Okay, I should only...ha, only have 2-3 more posts to finish up our trip to Ohio. Tomorrow I hope to have the most exciting post of all....the details of Kylie's follow-up visit with her neuro at the Cleveland Clinic. You will surely want to check back in for that :)

O-H...I-O (Part 2)

Of course Ma'amMa and Papa had a pool and more toys for Kylie to play with outside. Here are some pics of her playing in the water and just exploring outside.

Abbey...the dog, was inside and Kylie had fun walking up to the front door and Kylie would laugh each time the dog barked and jumped up.

Kylie spotted an ant crawling around and she was intent on following where it went.

Don't you just love how this pic came out!

A bad storm had come by, and Kylie wanted to sit outside on the porch while Matt was out there. I thought this pic was just so cute, so I had to take it.

One of my high school friends came over to visit. Kylie tried to sit on my lap while I was holding her little girl....apparently she doesn't like to share her mommy too well :) We had a good time catching up on things and sharing mommy stories.

Kylie doing her infamous lean in and put her head down hug to the baby.

We went to a Mahoning Valley Scrappers game while we were in Ohio. Matt loves baseball and they had a bunch of kid stuff going on that day. They did face painting, but we had to opt for the leg, and Kylie still wasn't much of a fan. Santa Claus was also there passing out candy.... Christmas in July...Kylie was not a fan of him.

Enjoying her hotdog at the game. I need to get her saying hotdog on video so you can all hear how cute it sounds!

They gave away webkinz to all kids that attended the game. Matt asked one of the players is they had a ball for the baby...though we all know it was really for him :)

My mom got Kylie tons of clothes and this is just one of the super cute outfits she got her. She looked so cute, that I just couldn't stop taking pictures!

Kylie loved chasing my parents dog around and trying to pet her and feed her everything she could. She was tickled to death when we would help her hold Abbey.

Sometimes we hold Kylie like a baby, because she thinks it is silly.