All things Kylie...lots of cuteness!

I know the title has the added note lots of cuteness. I'm sure all of you are just thinking, isn't there always lots of cuteness, as far as Kylie is considered. The answer would be the obvious Yes :)




So we got Kylie some new shoes, because all she is doing is growing. Just today another mom at the library asked if she was 2 1/2 or 3. She was surprised when I told her that Kylie was almost 2...she is just so tall! Oh, and I tried to get her stand next to her growth chart today and I got her to be like 35 inches...she has grown 3 inches in the last 5 months!




Anyhow, back to the shoes. Kylie has been doing great for a little while now (since the end or even middle of summer) at getting all of her shoes off, and she has recently learned how to get these new ones on! I will admit that most of her shoes in the past have been ones that don't have velcro or anything like that, so they require wiggling to get them on.




She is very excited to show us that she can get them on, and that is always a plus to see her thrilled about her own many talents!






The other night Matt wanted to take Kylie fishing at a little pond just a couple minutes from the house. Off we went and lots of fish did Kylie and Matt catch.



Here are some sweet pics I took with my phone:

Fishing with her daddy

So excited to see the first catch!

The fish was so tiny you can't see it in the pic, but Kylie was trying to hold it! She definitely got that from her dad, because I still won't touch a fish.

Guess what she is thinking about doing?

She thought about it....then tried to do it....give the fishy a kiss.

Getting close with the fishy in her attempts at kissing it. Don't you love that the sunlight is outlining her sweet face!

So no pics for this next little cute story. I have taught Kylie to say sorry when she hurts something or throws a toy or whatever. She will then give a hug and a kiss. This isn't just limited to people. She will kiss her dolls and toys too.

I have extended that to telling her that we need to give hugs when someone is sad. So if we are reading a book or watching something on TV, and I mention that someone is sad, scared, or hurt she will say hug and hug the page of the book or walk up and hug the TV.

With all of that said, just yesterday she heard a child crying when we were at the library, and I said that someone must be sad. She said hug, and then ran to find the child that was upset so she could give them a hug. She didn't find them, but it was so sweet of her to think that, and then try to find the little one that was crying.

We had Kylie's current Kindermusik CD playing in the car this evening, and Kylie has recently playing along with the actions we do in class....here you can see her doing the part where she has to peek. So cute how she covers her face and then lights up when she says peek and uncovers her eyes!

Lots of pics, and sweet moments, and more!

I am long overdue for posting pics and all sorts of randomness. Sorry, I have been crafting and reading books, and lots of new things :)


I realized that some of the pics I had been meaning to post were from September, and since we are almost halfway through October, I needed to catch up. So here goes!


We had went to a Kids Fest deal sometime in August or maybe in the beginning of September, and lots of vendors had pipe cleaners and beads for kids to string on them. Kylie was having a hard time with it, but I kept it in mind as something to do with her down the road.


While organizing all of my craft stuff, I came across some pipe cleaners and beads, and thought I would give it a try. Kylie proceeded to throw the beads across the table when she got frustrated, so we put them aside. The next day or so, she was real quite when I was working on lunch or something. I went to investigate and found this:

She was working so hard to get the beads on, and doing her best to work through it and not yell in frustration. Way to go Kylie!

A look at her handy work amongst all the beads.

So that same morning, she was all excited dancing around and having loads of fun, silly moments. Of course I had to capture them with some pics:

Love this one!

Kylie has a coloring book that had a sheet of stickers in it, and on this particular evening before bath time, she decided to put them on herself.

As we all know, Kylie LOVES animals, so we were super excited to get an Evite from Infant Toddler Services, to say that they were having a family fun event at Deanna Rose for children that receive their services.

Just look at all the fun and cute pics we captured that day! Oh, and the newsletter that they send to us via email had a snapshot of Kylie in it!

On our last night in Ohio with my family, my mom had bought this Koosh ball thing for Kylie. She likes to either grab the little handle on it or one of the spikey things on it and shake it like crazy. Here you can see how proud she was when she was shaking it all around.

Here is her all smiley as she was giggling and telling me how she just bonked herself in the head with it.





Don't you just love when little kids look so grown up, and they are doing big kid things! Like Kylie laying on her belly with a bowl of cereal and watching TV.

Following her bowl of cereal, we told Kylie that we had to get going because we had a surprise for her. I started doing this recently and telling her that she would be getting surprises. She has gotten to the point now, where she tries to guess what the surprise is based on past surprises (visiting daddy at work, going to the park, etc).

Okay, so back to the surprise that day. We went to a local nursery where they were having a fall event for kids. They had animals, refreshments, pumpkins to decorate and just lots of fun. The best part is Kylie got to see her friend there, and that made her really happy. Take a look at the slideshow of pics we got from our day there.

Just a few days ago, Kylie and I were playing outside and she wanted to draw with her chalk. I told her that I was going to draw her a picture and that she needed to help me with it. I would give her two color choices for each thing I was going to draw, and she would choose which one she wanted me to use. Here is the end result:

Now here are a few pics of Kylie during and then after we finished drawing with our chalk.

Just look at those Goldilocks of hers! It is really growing more, and I love how it's kinda curly in the back!

SticKids = Lots of Hope

Today was an absolutely AMAZING day! Let me back up by telling you about Wednesday first...that was a great day too!

I was planning to put this (Wed info) in a super long blog post (with tons of pics too) that I started working on the other day, but the awesomeness of today has inspired me to share it all now :)

Okay, so back to me telling you about Wednesday.

That was the day that we had a new OT come over with Kylie's current therapist to discuss all things sensory. All I can say is that I feel she is "The Sensory Expert."

I immediately felt comfortable with her, which is Huge, because if that wasn't there then it would make the process more difficult. I can say that you really need to believe in your therapist to make things work. I totally Believe!

Our appointment was scheduled to last an hour, as are all of our apptmts. Both therapists stayed for just over 1 1/2 hrs. Our regular therapist tends to stay over an hour when she can, because she is so supportive and wants to do whatever she can for Kylie and us.

So yes, the love and drive are definitely there and that alone just speaks so much!

I was so excited to see how much growth Kylie has made in the months since we have been receiving services. The little girl that would cling to me and scream when I tried to move, was now feeding her therapist her cereal, playing pretend with her with her food, reading books with her. Just amazing!

Oh, and she even tried to interact with our new OT. She kept a safe distance and was hesitant, but she still tried. To think how scared she tends to be with new people. She just warmed up so quickly...who'd have thought :)

Our OT did a sensory profile and she said she just uses it as a guideline, because sometimes kids can test just fine in areas where it is obvious to her where they need help and vice versa. I don't have Kylie's official results, but she did mention that Kylie had issues in all areas, but 3 more so than the rest.

I've been trying to think about what it was that made me feel like this is it...this is exactly what I feel will work and this is the person that can help us all make that happen. Problem is, I can't pinpoint what it was about our meeting that made me feel that way. It was just all so right for Kylie, for us :)

This will let you know how excited I felt after they left. Here is a copy of the email I sent to our regular therapist and to our family service coordinator (she determines who comes to help and what help is needed).

I just wanted to email and let you both know how excited I am about where we are going with Kylie! She is and always has been an amazing little girl and we could have never come this far without your support, and all of the care you have given Kylie and our family. For what seemed like a long time, we felt alone in this (in the physical sense) and weren't sure how we would get through everything and know how to best help Kylie. God has totally answered our prayers and more by placing you both in our lives and helping us put all of the right things in place for Kylie. I just wanted you both to know that you are part of the little miracle that we call Kylie. She has become such a shining light in our lives and just gets brighter all the time, because of your expertise and love for our family.

So yes, thank you times infinity :)

There's another thing I wanted to add. Today was a GREAT day for us, and I don't think it was a coincidence that today just also happened to be a day that M and C were here. I really loved meeting C and I think she is going to show and teach me things that will be a tremendous help to us. She really knows her stuff, just from the meeting we had today. I am just thrilled to see how much brighter Kylie will shine with her on our team! I know she is on our team thanks to both of you for seeing that she is just what Kylie needs to get to that next level. So thank you again!

So it is obvious from the email I sent that I was definitely elated after our visit on Wednesday. We then scheduled to do another co-treatment for what I thought was next Friday during Kylie's naptime, so we can discuss what we were going to do to help Kylie.

That appointment ended up being today, which was perfect because I put Kylie down late for her nap, since we got home late from our playdate today....more on that later.

I was sewing some of my flowers when I heard a light knock at the door. I was going to just ignore it, but I figured it must be someone I know since they didn't ring the bell with Kylie napping.

So glad I got it, because it was our amazing team of therapists ready with a game plan. Our OT received a grant or scholarship for her work and she had purchased this program specifically for kids with Sensory Processing Disorders. It is called SticKids. Click here for more info. I am already convinced it is the best program out there!

Through this program our OT was able to design a Sensory Diet specific for Kylie. This model addresses 6 areas: Motion, Pressure n' Touch, Heavy Work, Retreat, Routine n' Planning, Suck Chew n' Breathe.

We have sheets for each area, with ideas on what we can do to help Kylie. Some of those activities are: goopy play, massage, climbing, jumping on a trampoline, giving choices, negotiate, quiet time, my own space, blowing bubbles....just to name a few.

Anyhow, just as we feed Kylie 3 meals and 3 snacks a day, we are to give her 3 meals of therapy and 3 snacks of therapy a day. Since the goopy play is a big thing that brings on lots of anxiety for Kylie, we would consider that a meal, and climbing would be considered more of a snack.

We will have to gauge how things go and determine if Kylie is more of a snack kid, as far as therapies are concerned or if we can do both.

The absolute best part of this is that we can plug all of these things into a calendar so we have activities already planned out for us! I love that feature of this program.

I told our OT that I tend to get overwhelmed with new things like this, because I wouldn't know which one I should pick first and what to go with it. This program has so many wonderful features, one of them being a weekly planner. I was instantly sold when I heard that!

Since she is the expert, she is going to set up a calendar for us to get started on. Yay!!

I was sure to let both therapists know how excited I was about the direction we are going in. Lots of hope and excitement!

So one more wonderful day with some truly awesome ladies!

Infantile Spasms Awareness Week

Last year marked the first year of Infantile Spasms Awareness. Since it was just up and going, not much was done to promote it. I'm not sure much more is being done this year either. So I have taken it upon myself to post a bit about it to Kylie's blog.

First, I wanted to give you all the link to the site that started Infantile Spasms Awareness. Here you will find a few different tabs to click on and they will provide you with some basic information on what it is, the diagnosis, and treatment, and so forth.

You will see a video on what Infantile Spasms look like, but I wanted to let you all know that Kylie's seizures didn't start out like that. They were so subtle, that I thought I was just being paranoid about the subtle movements I was seeing. I wish that's all it was, a new mommy paranoia and not my super mommy instinct that lead to a diagnosis as devastating as Infantile Spasms.

Here is a video of what Kylie's seizures looked like in the beginning. Actually they were more subtle than this, but the initial video (taken with my cell phone) of that is hard to depict the movements.

Make an on-line slide show at www.OneTrueMedia.com

It looked like she was shrugging her shoulders just slightly, and her hands would go up a bit. Also I noticed her eyes were watery, so much that it always ran out of her right eye and down her face. It would stop her for a second or two, and then she would continue what she was doing, and then it would be there again, and this would repeat itself every couple of seconds for up to 10-12 minutes.

Every little movement that looked so benign, was a seizure. These are completely separate from all other seizures that you may have heard of. This is the ONLY form of epilepsy that is associated with developmental delay and cognitive impairment. They still do not know if it is the diagnosis of Infantile Spasms or the actual seizures that cause these issues. I believe it is the seizures, just from my limited experience with this and other stories I have followed. It seems as though the children that have had seizures longer, have had the greater difficulty.

It is very important to know that the quicker the diagnosis and treatment, the better the outcome. Some cases of Infantile Spasms have a cause ( brain abnormalities that are revealed in an MRI), while others have no cause to be found. That would be the case with Kylie...no cause.

We were told that 1 in 5,000 kids are diagnosed with Infantile Spasms. So it is definitely rare, but when Kylie was diagnosed, her neurologist told us they had seen a flurry of kids come through with this. There has to be something going on somewhere, that has led to this.

I urge all of you with children to ask your child's pediatrician if they know what Infantile Spasms is (what the signs are, what to look for), and if they have ever diagnosed a child with it. I'd be interested to know how they respond.

So at your child's next well check-up or sick visit. Please ask, and share with friends that have infants. You could help save a child from going through more than ever should have to endure with this diagnosis.

When we first started researching what Infantile Spasms was, we were devastated and thought everything was over for us and the life we dreamed of for our daughter. There is little research on the topic, and what has been done can be very scary for those digging for information. That is why it is SO very important to know what this is and to act quickly and never back down when you feel something isn't quite right with your child.

Kylie has been one of the lucky ones, she is doing more than what we ever expected her to do. More than what many kids have done with this diagnosis. She is simply amazing and just shines brighter and brighter all the time.

She is everything to us! Let your child shine just as bright by protecting them and making yourself aware of what Infantile Spasms is.

In honor of Kylie and the many other children that have endured this horrible thing known as Infantile Spasms, please share this with all you know during Infantile Spasms Awareness Week and every day there after.

Infantile Spasms Awareness Week is next week October 11-17th.

One more thing before I let you go. We celebrated Purple Day in honor of all those with Epilepsy, so I am asking that you wear purple for those with Infantile Spasms.

If you have time to take a pic, please send it to me (jodystump@hotmail.com) and I will do a blog post of all those in support of Infantile Spasms Awareness.

the beginning of something great

Kylie has made great friends with one of her Kindermusik classmates, and I love how much they enjoy the playdates we've had over the past few weeks.



Kylie lights up when I tell her that we are going to meet him at the library or park or wherever. His mom tells us that he does the same thing too. I think it is great that she is beginning to make little friends and recognize them when we see them outside of class. I think it is important for her to feel comfortable around more people, and I hope that makes things easier for her when we are out and about.



Kylie has been doing amazingly well at giving hugs and kisses and high fives to her friends when we say goodbye to head home. It is so sweet, and makes me teary when I see it. I've even been doing the "ooohhhs and awwwws" when I see her do these precious things.



During one of our most recent playdates, I was able to capture a couple of these moments on my cell phone. Just look how cute they are together!



Sharing some snacks at the park.

The sweetest, most precious little kiss goodbye! (It took 3 kisses until I was able to get this shot)

Can't Touch This...Oh, Yes I Can!

Sometimes we make a stop on our way home from church on Sundays to get a donut...part treat and part sensory therapy for Kylie.

Our most recent donut experience was completely different from past ones. Just take a look for yourself:

It wasn't until after she had a couple bites where she realized she had some stickyness on her hands. She was okay to wipe her hands on her clothes to clean them, but I tried to stop that and h

Some days I never thought she would learn to be okay with touching something like that. I love how she is showing me all the more she can do...all the time!

Just look at how beautiful and happy she looks!

She is such a big girl and has overcome so much...makes me teary to even type about it. Love, love her so very much!

I Need To Go

Kylie has been doing absolutely great about going on the potty lately. We couldn't be more proud of her!

This last few times she has successfully gone in the potty was after she told us (either by signing or saying potty) that she needed to go. Wow, we never expected her to communicate this to us so soon after going on the potty.

Pretty much every time we put her on the potty she goes. So either she always has to go potty, or she is really getting the hang of it. I think she is getting this all figured out, and enjoys the cheers from us, and her rewards for going...candy and a sticker.

I recently cashed in some of my Pampers Rewards to get Kylie a Dora potty seat. It arrived in the mail yesterday and Kylie was super excited to receive a surprise from the mailman. She was all smiles as we opened the box and she got a glimpse of Dora.

Yesterday marked the first day that she used her potty seat on the big potty and she had success....not once but Twice!

All things Kylie

So it has been a little while since I have posted...sorry, I have been a little busy. Here is a peek at what has kept me away from the computer recently.





Yep, I have been getting crafty with making flower pins and hair clips. I had no idea they would be so labor intensive, but they are simply adorable and I love making them :)

Okay, so let's get to all things Kylie :)

She is just the cutest, sweetest, silliest, most amazing little girl! I know I saw those things a lot, but only because they are true!


Icky, Sticky Situations

She has started to be okay with things that are sticky and goeey, and just plain old messy. I know, I should be celebrating more, but I am really cringing inside. I don't think I can handle her being an icky, sticky little girl. Or that I will be cleaning up more things, and doing more laundry, and just wow...having to come outside of my comfort zone and be okay with these things.

We had taken a trip to the DQ with our neighbors and Kylie likes to eat her cone from the bottom most times, which obviously causes more opportunities for leakage and sticky gooeyness. When it got all over her hands, she didn't seem to mind one bit.

I, on the other hand, was thinking this is going to be soooo messy, and maybe we should just take the ice cream away from her. Of course that would have then made for a sticky, and very unhappy Kylie....so I let her finish it.

Oh, and lately she has been taking care of her own icky hands and fingers....she just wipes them on her clothes. Ahhh...yes, more laundry. She went from getting so upset with even water on her hands and freaking out, to just showing me her hands and fussing for me to clean them, to now taking matters into her own hands and using her clothes as a wash cloth.

The other thing that means for me, aside from more laundry...is me being all panic-like and trying to get to her hands before she wipes them on herself. Where is the therapy for me to get used to this?

Baring it all

A post or two ago, I blogged about Kylie going on the potty. I can happily report that she has gone pee pee 11 times now! Yay for Kylie :) The best part is that she is getting excited about it now. She cheers for herself and then stands up and looks at what she has just done. It is so funny and cute.

Oh, the baring it part is that she has to be completely naked when she sits on the potty. No idea why, but she just does. Hey, as long as she goes I am fine with it...for now anyhow :)

A few days ago Kylie had started not wanting to go on the potty, so I told her that I would get her new books to read if she sat on the potty. So far it is working. I just sit her on the potty...naked and all, and then tell her I am going to get her a new book to read. They are just old books I put in her closet that she hasn't seen for a while.

And while I am looking for a new book, I hear Kylie say Ewww...and then Pee Pee, and she starts cheering. For some reason, she is more comfortable going potty when I leave the room. I'd call it being modes, except for the fact that she is naked. So I suppose it just means she wants her privacy :)

Kisses and Cuddles

I think it was last Tuesday when Kylie got her first kiss! So young I know :) We have had a few playdates with one of Kylie's classmates from Kindermusik and when we were leaving, he gave her a hug and a kiss. Now she was trying to get away from him, but it was so cute and her little friend is so sweet. She did try to reach her hands out to hug him, but then retracted....so close though!

Apparently all the hugs she has been receiving from her little friend have helped her. We had a playdate yesterday with another little friend from her class, and Kylie gave the little girl a handful of hugs and high fives as we were getting ready to leave. I was soooo excited, because this is the first time she has initiated a hug with a little friend. And then she gave the mom a hug too! Amazing!

Rainbow of Colors

We are fairly certain Kylie knows most of her colors already. Sometimes you have to ask her twice, because she likes to be silly. There were a few days where she kept saying that everything was yellow. As far as we know she knows the following colors: red, orange, yellow, green, blue, pink, black, white, and sometimes purple.

Dancing in the Rain

We had an umbrella opened up in the garage...drying it out from some recent rain we received. Kylie grabbed it and started saying rain. She started dancing around the driveway and turning it all around and playing with it. It was so cute, that I had to run in and grab the camera.

How cute would it have been if it was raining and she was playing in it! Only a matter of time I'm sure :)

Girly girl

I'm not sure Kylie will be the girly girl type, but she does have her moments. Matt's friend Branden recently went to Italy and he brought her back this adorable little purse. When he gave it to her, her face just lit up and she was uber excited!

The cutest is how she usually holds it. She puts it all the way up her arm and sticks out her arm to hold it up...adorable! She was playing with it outside, just before playing with the umbrella but wouldn't hold it when I tried to take a pic.

This is the best I got...when she was carrying it to go set it down and grab the umbrella.

Tootsies

For some reason, Kylie does not really like to wear shoes. Most times when we leave the house, we just take her shoes with us and put them on her when we get to wherever we are going. That saves us from having to find where she tossed them in the car, and from repeating the process of putting her shoes on.

She has even taken her shoes off a couple times when she has been outside. This is very new for Kylie. She will walk around on the driveway very carefully. Today she walked into a small flowerbed by the garage with her bare feet. I was in shock...I couldn't believe she was doing this. That and the fact that this meant she would be dirty.....I'm just not used to all this. Oh, and she apparently sat in some dirt somewhere because her bottom was all dirty too.

Here are a couple pics I snapped of her in her bare feet this afternoon.

I know, she has a hammer and some screws....she was helping daddy. And yes, she was supervised the whole time :) One of the songs from her Kindermusik class this semester talks about the sounds of things around the house....a hammer goes rap, rap, rap. Needless to say she was excited to see a hammer and she kept saying rap, rap.