Home Sweet Home (Again)

Well, we're home.



It's amazing how much of a difference the familiarity of home makes. Your own bed, your own spot on the couch, your own bathroom...everything. It sure is nice to be home. That's not to say we didn't enjoy spending time with Grandma and Grandpa Bieganowski and their wonderful hospitality, but there's something to be said for being home.



We'll try and make this post a recap of the trip as a whole, since you all already know what Dr. Ghosh said from the previous post.



We left our home in Lenexa last Friday night at about 9:00pm. We were hoping that Kylie would sleep in the car, making the 14-hour drive to northeast Ohio a little more managable.



No so much.



She slept maybe two hours once we got outside of the KC area. I'm fairly certain she was awake somewhere around Columbia, MO. Huge thanks to my coworker Bobbie who lent us the portable DVD player. Second big thanks to the folks that created Yo Gabba Gabba. That kept Kylie's focus off of screaming for a while.



The fact that she wouldn't sleep and the fact that I couldn't sleep (driving) forced us to pull over in Terre Haute, IN. We found a lovely Days Inn around 3;30am (4:30 local time, they're still CST, but don't do daylight savings) and crashed for a few hours. Oh, and by lovely, I mean scary. Of course, Kylie wanted nothing to do with sleeping, so she ran around the room making a bunch of noise and tearing up tissues. You know how some hotels have the tissue box on the "face" of the vanity? Well, Kylie found them. When I woke up three hours later, Kylie was asleep in the bed next to me with Mom and there were 20 tissues on the floor. Only, there weren't 20 tissues on the floor. There were hundreds of tissue scraps and shards on the floor. The carcasses of 20 tissues. At least she had fun! There's a picture of that mess in the slide show.



We thankfully departed the scary Days Inn around 9:30 local time and drove the rest of the way to Lordstown, OH. With Yo Gabba Gabba playing on a loop in the backseat (and Mommy going crazy watching and listening to it) Kylie did an amazing job as a member of the road trip team. We occasionally stopped for gas and food, making it to our destination around 4:45 in the evening.



We stayed with Jody's parents while there (they are only an hour or so from Cleveland). Once Kylie overcame the "new person" fear, she really warmed up to both Grandma and Grandpa Bieganowski, as well as Uncle Joey.



Once we got in the door, Kylie met Abbie, the resident princess. Abbie is a Teacup Yorkie that has more toys and clothes than a Wal-Mart. Kylie, even with just a little bit of sleep, just lit up when she saw the dog. Throughout the few days we were there, Kylie would chase Abbie around with a gigantic grin plastered across her face. I'm sure that dog is sleeping well now that her little buddy isn't there to chase her.



Saturday night was pretty rough. Kylie hadn't slept more than a couple hours the night before and didn't do too well at napping in the car either. So, she woke up a few times all out of sorts - mostly due to the lack of sleep, but I'm sure the new surroundings had a lot to do with it too. That wasn't fun.



Sunday and Monday had us just relaxing - we didn't do anything more exciting than a trip to Wal-Mart, but it was a welcome break after not sleeping much the previous couple of nights. A result of that Wal-Mart trip was a super cool pony, a big teddy bear and some PJs from Grandma and Grandpa B for Kylie. The pony is one of those ride-on jobs that plays music and everything. She's not really a fan of riding it, but she likes to push the music button, put toys in the basket and push it around.



We woke up on Tuesday and drove up to Cleveland. The directions from Google maps said 1 hr, 4 min. I wanted to leave about 7:30 to make sure we had plenty of time. Well, I overslept so we didn't leave until a few minutes after 8:00. Still no problem for a 9:40 appointment, right?



Wrong.



Google maps took us through a not so lovely part of Cleveland. It kind of reminded us of the Days Inn we'd stayed at a few nights prior. Somehow, the 10 miles from the highway to the hospital took us FOREVER. Stoplights, stop signs, pedestrians, bus stops, you name it, we encountered it. We arrived about 10 minutes late to our appointment. Oops.



We've already gone over the appointment itself, so we'll make this part quick. First, the Cleveland Clinic is huge! For those folks in KC, picture the Sprint campus. Navigating around to find parking, then the right building, then the right elevators can be a very daunting task. Luckily, we had some good directions and didn't have much trouble once we found a place to park.



Everyone there was very nice and accomodating. We've already talked about Dr. Ghosh, but he was great. Took a lot of time going over everything with us and even stopped and talked with us in the hall for a few minutes after the appointment.



We had lunch there at the hospital while waiting for Dr. Ghosh to get everything all typed up and printed. I don't know that I can stress enough how crazy this place was. Walking down from the clinic to the cafeteria, there are people everywhere. Picture the mall around Christmas!



Once we'd met with Dr. Ghosh again we were back on our way. Kylie did a great job on the drive back to Lordstown, just as she'd done from Lordstown to Cleveland. Back with Jody's parents we did our best to relax and get ready for the long drive back home. Huge thanks to Grandma and Grandpa Bieganowski for the hospitality!



I'm not sure what night it was, but Kylie and Grandma Bieganowski got into a pretty good conversation. Only, it wasn't a conversation. Grandma would "moo" at Kylie and then Kylie would babble back. It was adorable! There's a pic of Grandma B. and Kylie in the big chair, I'm pretty sure it was taken right around the same time as the "moo-fest".



We stayed in Ohio until Thursday morning, when we left around 9:30. We stopped and saw Jody's friend Kristy and her new baby Ava (who is 6 weeks old), who live about two hours west of Jody's parents. Kristy was nice enough to whip us up some lunch...a delicious pizza casserole that we loved! Kylie was a big fan. So much so that Jody made it today for lunch and Kylie gobbled it up again. We left Kristy's house amid a pretty good snowstorm and drove all the way back to Terre Haute (it's almost exactly half way).



This time stayed in a lovely (and I mean it) Drury Inn. Big flat screen TV, granite counters, a fantastic free hot breakfast, doors/hallways on the inside, etc. All for just a few bucks more than the scary Day's Inn across the street. They even had a crib for Kylie! The most amazing thing was that Kylie slept like a rock in the new bed, in the new environment. What a trooper!



Anyways, we left there around 9:00am on Friday and arrived back home right at 3:15pm. We did gain an hour due to the time change, and we stopped in Columbia, MO for lunch. Kylie did quite well on both legs of the journey home.



We were even greeted home with some more snow! Yippee.



Here are some pictures that accompany the anecdotes above. There were just too many to plug into the post!

What is "Stereotypy"

Okay, so we saw the super duper movement specialist and this is what he said. Kylie is diagnosed with Stereotypic Movement Disorder. The stereotypies are the movements that she has been doing, and he explained to us what those can look like: the head back, the waving the hands together out in front of her (kind of like in an excited state), putting the hands behind the head, and playing with their ears.

Here is a link that explains a bit more about this stuff...http://en.wikipedia.org/wiki/Stereotypy. (Yes, I know it is Wikipedia, but that is the best I can do right now...trying to make this quick so we can get back in the car).

Here is a just a bit more of what we learned today. There is no treatment for this. These movements can get worse, stay the same, or eventually go away. She can develop tics later on. 95% of kids with this are either mentally retarded or autistic. He believes that we can currently rule out the mental retardation since she understands a lot of things (50-60 commands or words)....although, there is still a chance she can develop it as she comes across more challenging things when she gets older.

He believes that she would probably be on the mild end of autistic spectrum disorder, due to how she prefers to play independently, likes things a certain way, and how she responds to new people. This is also subject to changing and/or improving with time. He has put in a doctor's order for Behavior Management to help with her social skills, as it is an issue associated with the autism.

He also put in an order for Speech Therapy, since she does not say any words.

I think that is about it for now. I will be sure to update an clarify things once we get back home and settled in.

Oh...on a side note, the doc we met with today said that one of our hospital's back home (KU Medical Center) wants to start up a Pediatric Neurology Department and the head guy there keeps calling him to come on board. We did our best to encourage him to do so, since it is so much closer to home, but he didn't appear as though he was going to make the move. Who knows though.

K, thanks for following and stay tuned for more info to come.

On the road again...almost

It is amazing how exhausting and draining this can all be. Also interesting how we seemed to take turns on being stressed and how well we deal with things. I guess that is a good thing in a way, because one of us is there to bring the other one back up.



Our doc did not feel there was a reason to see Kylie or have any testing done to rule out seizures. Of course this is very hard for us to take, because what we saw was definitely frightening and looked like much more than a simple motor tic. We know we are not doctors, but we need the evaluation and testing to know what is or is not going on. At the least, it would be nice to have the this is why I think it is this versus that and so on...we haven't got that yet.



With that said, we will be heading to the Cleveland Clinic for a second opinion. They can get us in quicker than anyone else at this point, so we will go with them. We are planning on driving there as it is the most economical, and will definitely be a true test of how patient we both are with one another in a car for roughly 15 hours with a 14 1/2 month old....ha, should be fun, right? :)

So yeah, let the freak out of the list making of what to take begin.

What?!

If breathing were only so simple right now...not sure if I want to scream or to just pass out. We have called the doc once last night to no avail and twice this morning. I just got an email back from him in response to the video I sent him. Mind you in the video, her head and going all the way back so her eyes are straight up at the ceiling, and then coming forward pretty harsh with her chin nearly touching her chest. This is repeated and abrupt and not something anyone wants to see their child do.

His response:

These are typical simple motor tics. They are very frequent in children. They should not be a cause for any worry.

I'm sorry, but when my child's head looks like it is going to fall off, there is nothing simple or typical about that! There were a couple times where her head went back so far and came forward so fast that she almost fell over...I never heard of tics being so violent.

Oh yeah, and still waiting for a call back, so we have called St. Louis to see if they can get us in there. I feel like we are stuck and no one is really letting us speak, and it wouldn't matter because it's as if they wouldn't listen anyway.

What are we supposed to do, where do we go from here? We thought about going to the ER, but from our neuro's response, we are suspecting they will pretty much just dismiss us. Why do we have to scramble and go through all of this crap..yes, it is total crap...in order to get someone to listen to us, and see Kylie?!

We are working on getting our doc to get us a referral to either St. Louis, Houston, or Cleveland....whoever can see her the soonest. It will either be an extended drive or booking some last minute flight. Why is that need-to-puke feeling just lingering so much right now? Oh yeah, and the wanting to yell at someone.

Breathing...kind of.

Ready set...pray

Hey everyone. I know I got that happier post up earlier today with lots of cute and silly Kylie pics...totally needed that.


Amazing how that all changes so quickly...kinda not good how fast your world can be flipped upside. So yeah, not so great...not in the least. It seems like this head stuff is getting more intense and more frequent, and it can not be shrugged off....there is no question that something IS really going on.


Last night on two occassions, Kylie's head went back...like we have been seeing, but different this time. One time it went back then came forward pretty hard and back again....something we have never seen. The second time it went back and then forward hard and to the right and back again. Seeing this stuff is so scary...it's something you never want to see.


Tonight was the scariest. Her head was forward and back too many times to even count. It was more intense than last night, and it just kept happening. It went on for about 7 min or so (guesstimate). Then it contd off and on for about a half hour and then here and there throughout the night. Needless to say things are scary right now, and we are wondering what this all is, and what may follow.


Matt called the neuro clinic and the on-call doc called back. Matt explained it all to him, told him we got it on video. I got it all uploaded and ready to send and the doc said to just call our neuro in the AM. What?! Okay, I guess I can understand if maybe he can't do much for us, but tell us what you can and can't do and don't just leave us like that...explain yourself and the process to getting things done.


Since then, I have emailed it to our neuro in hopes that he will get back to us before we have to make the call in the morning. I also emailed it to the doc in St. Louis, and said that we are willing to head that way in the case that our neuro and hospital here are not able to get us in or even see us. I hope it doesn't come to that...I hope they get it this time. The video should explain itself. I just hate that it had to get worse before anything happening on their end...I shouldn't speak to soon, because right now they have done nothing than say to call in the morning.


So please pray for Kylie. Pray that whatever is going on can give us answers so we can better move forward. Pray that her body will be healed. Pray that God will give the docs the insight and wisdom to find the answers. Pray that Matt and I do not let our faith waiver at this time and that we will seek Him when we grow weary and weak, and lean on Him to help us through whatever may lie before us.

Picture pages

Do you remember picture pages with Bill Cosby? I used to love watching that as a kid! I really loved the sound that his marker made when he waw drawing something.

Anyway, this post is mainly a slideshow of pics that we have taken recently. Since the last post is not so happy and cheery...kinda like mom and dad right now, I thought we should brighten it up with some pics of Kylie.

Last night Kylie was pretty cranky...she acquired another cold somehow. So dad decided it would be fun to take all the cushions and pillows off the couch and cover the floor with them. How much fun it was to see Kylie climbing and tumbling over all of them. A great new game and adventure for a rainy day.

Anyhow, enjoy the pics and maybe say a prayer that things will be okay, and to help us put our wandering minds at rest.

The last dance

So...while we were having fun with our family dance off last night, and it was a lot of fun too...just picture the three of us dancing around and being so silly. I wish there was like a camera mounted on the wall and filming those moments, because it was a good night for us.

But yeah, back to when the record started to skip (the record being our hearts), and Club Stump came to a close upon seeing the not so welcome odd head movements. It is amazing how much a of kill joy that can be for mom and dad. There really isn't a better way to say how much it just sucks when we see these things, and we pray that Kylie will be okay, and somehow be unscathed by it all....can't say that will be the case for mom and dad, but we are trying.


So yeah, it was during the time I was working on filming Kylie's silly, crazy, and adorable dance moves, which I like to refer to as the I can't dance dance moves that I got from my dada. Sorry hun, I love you but you have a bit of work to do on your dancing :)

For some odd reason I stopped filming when I saw her do it...some sort of automatic reaction where I wasn't thinking to keep filming to save and show the doc...you know that guy that says it is behavioral or self stimulation..blah blah....I know my baby better than anyone, but that is a whole other story and then some.

I wanted to edit the clip and post just the dancing part of it, but Matt said no...that I should post it and let everyone see what looks like nothing to the untrained eye, but is definitely what causes our hearts to skip a beat and sink into our chest.


Once I realized that I stopped filming, which was a matter of a second or two, I immediately started filming again. Here are both videos back to back. The end is so sweet, Kylie being silly and so sweet.

But yeah, here is the record stopper. See if you can pinpoint what and when the dance floor got cleared.

Make an on-line slideshow at www.OneTrueMedia.com

Amazing how when Kylie first started up with all of this (Nov 3), it was happening a few times a day, then like 1-2 times a day, and then maybe a couple times a week. Then it seemed like nothing for a long time, and nothing when we finally got our VEEG...that is until a couple hours after we got home from the hospital that evening (Dec 17), and it seemed like she did it a million times. We were both like sick to our stomachs and ready for this to be over. I mean my goodness, we have days and weeks go by where we don't even think about things too much ... I mean it is always on our mind and more than likely always will be, but not in the way it is when we see what scares us.

Sorry, I started to get off track there. So yeah, it's like this thing IS always haunting us, and that is just really tough having those images before us...reminding us of what could be. So after our return home from the VEEG, we didn't see anything again for 12 days (Dec 29), and nothing again until just a couple days ago (Jan 12). The problem we are seeing right now is that there isn't much of a gap between when we are seeing them. She did it twice again on Thurs (Jan 14), and 3 times today (Jan 15).

Needless to say that if this continues then we very well may be calling up the docs in St. Louis and trying to get on board for a VEEG there...hopefully we can get in quicker, while she is still on a pattern of doing these more frequently. I know we cancelled our apptmt for Jan 4th, but the good thing of it is we never saw anything during the days we would have been there, so we know it was a good decision.

I will leave you all with a pic I took of Kylie a couple weeks ago and I just love it...it is the sweet, innocent little girl I see when I look at her. Love her so very much!

So Big!

This was all typed up last night...computer was being weird, so it is just now getting posted.

It seems like the postings are not quite as frequent or too detailed, but it is winter and there isn't a whole lot to do, especially with the record low temps we were having...not to mention the fact that Little Miss Kylie has yet to figure out what she is doing with her naps.



Yes, it seems like it has been forever and ever since we started on this whole thing of napping later, then earlier, then maybe just once a day and the length varies as well. So yeah, needless to say it adds to the difficulty of planning things to do outside of the house. It kinda stinks because so many places have story time or any other activity during the times she sleeps in the AM, and then like nothing is really offered for the afternoon.



So...it is safe to say that I am really anxious for two things: 1) for Kylie to work on sticking to the later nap schedule (or just one schedule of some sort), so we can squeeze in a morning activity outside of the house & 2) for Spring to finally get here so we can at least go outside.



Last week when we had a day that she got up kinda late in the morning, I was so excited because that was like a guarantee that we could go out and do something since I knew her AM nap would definitely be later. So what did we do? We went and saw none other than the imfamous Funky Mama perform! Just click the link to learn more about who Funky Mama is. It ended up being a snow day, so there were tons of mamas there with their kiddos, so it was a bit overwhelming for her at first.



Anyway, Kylie had a great time once she got warmed up to her surroundings and all the people around her. She loves to dance to just about everything...commercials, the theme song to Friends, mom and dad singing, pretty much anything. She finally started to dance and it was so cute and funny to watch. She has a new dance move where her arms are out like an airplance, and then of course the typical toddler dance where they are like bouncing with their tush sticking out. I was finally able to catch some of her silly dance moves on video. Take a look at how cute she is!





Some new things.



Kylie puts her hands way up high over her head when you say "SO Big!" and she has a big smile on her face :)



Sometime last week she learned how to climb up on the couch in the living room (the couches up there are a bit lower than the ones in the family room). We figured it was only a matter of time until she would be climbing up on the ones downstairs in the family room....yep, she got that figured out yesterday.



I think it was also yesterday or the day before that Kylie also learned how to climb up her castle swingset. I was in the kitchen getting a head start on dinner and she was a bit too quiet for me, so I went to see what she was up to. She was standing up on her castle swingset spinning the wheel at the top of the platform. I was thinking, oh no..one more thing she can fall from and get hurt. So I then helped her down the slide and she followed me back in the kitchen, so no more worries for that afternoon...whew! Below are a couple pics of her on her castle swingset deal that Matt's mom got her for Christmas. She really likes to put her farm animals down the slide and in the swing.

Okay, so her outfit doesn't exactly match...I know it was a day that I made something for dinner that would more than likely be messy, just can't quite remember what it was I made that day. Oh well, she's still cute no matter what :)