Wednesday, August 22, 2012

What's up Doc? (Ohio contd)

You read in the last post how we got to meet some great new IS friends while we were in Ohio.  Well, I can't remember if I mentioned it in the last post or not, but we had so much fun with our friends that we were running late to our neuro apptmt at the Cleveland Clinic. 
As luck would have it, Matt's phone was about to die, and I left mine back at my parents house.  Oh, and the day before, Kylie had broken the car charger...of course :)  So our kind friends let us charge Matt's phone in their house before we headed to the doctor.  Come to find that Matt did not have it plugged in all the way, so it didn't really charge...yep. 

Our sweet friends gave us directions to the Clinic, since we were coming from a different way, and the momma works there as an OB doc.  We are off, and I don't know what happened, but we got off track and as Matt's phone was about to turn off at any moment, we were able to look up the number to the Clinic to say we were running late.  Thankfully, there was an apptmt after ours and they got there early, so they just went ahead of us.  Thank goodness for those early folks!
We are finally there and Matt drops Kylie and I off in the street and we run across and into the building.  We get checked in and find our fish tank that we always look at.  

Making fish faces at the fish rock in the tank. 

Kylie immediately went to the floor when we got inside the room, but she got up when we told her to stand up...yay, this would not have worked last year!  The doc wanted Kylie to sit in the chair next to him, and she said no.  So she had a choice to sit in the chair by herself or on my lap...she chose my lap.  Also, she did great for the weight and height check..woohoo!! 

Look, she is even smiling!


Last year it worked out well for Kylie to bring her doctor kit, so we thought we would bring it again.  Sure enough...just look at her listening to Dr. Ghosh's heart!


There was a resident in there and she checked her heart too...and we can't forget Strawberry Shortcake!

As always, our pic with Dr. Ghosh!  Thank goodness for the resident, so she can take our pic :)  Before that, the doc asked the resident to take Kylie to find some stickers and a sucker.  She went with the girl!  Matt and I looked at each other and then the doc, and he said that was part of the see if she would go and she did :)

It just wouldn't be the same if we didn't go visit the tree downstairs.  I don't know why, but we all just love this tree! 


After visiting our tree, we went over to plug Matt's phone in for a bit before heading out to meet back up with our friends for ice cream.  While we did that, we found something new...these cute little turtles that are projected onto the carpet.  (sorry, they are upside in this pic).  Kylie really enjoyed watching them reappear. 


I asked Kylie if she would carry my purse while we got our things together to get ready to go...just something cute about this little lady of ours walking down the hospital halls. 


Then it was off to touch the water wall out front of the Clinic.  We do this each time we go's the little things :)

 I love this one...the water looks so pretty and those little hands reaching for it is just precious. 

After meeting back up with our friends for ice cream, it was back in the truck to return to grandma and grandpa's house.  It was one eventful day for all of us.

So how did the apptmt go?  It went really well.  The doc said he was pleasantly surprised with how well she was doing socially.  He said Kylie was now 1 of about 10 kids that have shown great improvement in that area....since she has so much anxiety and such, he had once put autism as one of her diagnosis', but removed that from her chart last year, and definitely didn't even think about it this year!  We were so excited with how the visit went, and the fact that we were late...I totally forgot to ask some questions.  So I emailed them to him. 

I asked if she needed an EEG again, since it had been a while...well you all that follow, know that we had one recently, but he said unless something suspicious is going on, then there was no need for one. I also asked why we needed to come each year for a follow up...I asked what he was looking for, so I knew what to work on with her.  He said he is required to do so, but there is no need, especially with us so far away.  Yay!  It was over all a great apptmt and we couldn't be happier with how well she did! 

Monday, August 13, 2012

Zoo and New Friends (Ohio Trip)

Yay, I am finally doing more posts from our Ohio trip :)  Let's see we got there late Saturday, and Tuesday was our apptmt at the Cleveland Clinic.  We wanted to meet up with a couple IS families that I have befriended in an online support group for IS, so we thought to do a trip to the Cleveland Zoo to meet one of the families. 

We decided to rent one of the zoo's strollers for Kylie to ride in...we didn't want her too tired and worn out for her appointment at the Clinic late in the afternoon.  She really liked riding in became her safety net for a little while after we met our friends.  New people and experiences heighten her anxiety, but after having fun seeing all of the animals and the anticipation to see more, she was able to relax some :)


Dadda, look over there...

...see all the giraffes!

We got to meet this sweet little girl, Alexis, and my goodness that sweet face of hers would just melt your heart.  I helped out her mom Erin for a moment and offered to hold her so they could collapse the strollers and things, so we could get loaded up on the tram to take us to the other side of the zoo.  As you can see, Kylie loved her!

Erin snapped a quick pic of me holding Alexis and Kylie saying hi to her. 

Alexis is just a doll, and she has also battled IS.

This was so cute, Erin's sister Shawna and her little girl joined us at the zoo...we were so grateful for Shawna's navigation skills at the zoo!  Anyhow, her is a pic I got of Alexis, Madeline, and Noah (Alexis' big brother) all side by side ready for the tram to get going. 


My parents got Kylie this Strawberry Shortcake doll, and Kylie said she had to come to the zoo with us.  So here is Strawberry Shortcake all safe in the netting on the tram as we headed to the other side of the zoo.

Looks like the kids spotted something out there...


After some editing, I got this pic of Alexis and Kylie.  It was just so beautiful to see them side by side.  I loved how Erin said that she was glad to meet us for a positive story and outcome with a child with IS.  Her boy Noah, has asked prior to meeting us if Kylie could walk, talk, crawl, etc.  When Erin told him yes, he said that maybe his sister would be able to do that too...that just touches my heart to hear that little guy looking to the future for his little sis.

After the zoo we stopped to get Matt a sandwich from Melt...the boy is obsessed with it since we went there last  Then we were off to meet another family who have a child that has also battled IS.  This little guy, is so cute with those cheeks and beautiful eyes...Sammy will melt her heart just like Alexis. 

Kylie eased in quite well to playing with some new friends.  You will see Kylie, Adler (Sammy's big sis), and Sammy playing.

I snagged this pic of Kylie and Sammy playing side by side...and some editing too :)  They are so cute!

Love the girls collecting some friends to put on a puppet show.

Here is Matt playing a game with Sammy, and his mom Tyler enjoying these moments we got to share together!

Yep, I think it is safe to say that Kylie loves her new friends...they are already playing dress up :)

Making some beautiful music together!

Kylie did not want to leave, she was having too much fun playing with Sammy and Adler.  We didn't get to stay too long, because we had to get to the Clinic for Kylie's apptmt.  In attempts of getting Kylie to leave and say goodbye, her and Adler were hugging and neither one would let go...goodness that just makes my heart so happy and weepy. Anyhow, they both fell over hugging and giggling.  I got a quick blurry pic of that moment..and I love it...such a sweet girly moment captured!

So why the weepy and happy heart...because we went from a little girl that we didn't know would hug us because of her sensory issues, and now she is hugging new incredible is that!

Because we just didn't have much time to soak up all the joy of new friends...IS friends that really get the struggle, the fear, and the need for hope, we met up with them later for some ice cream. 

I will say it was a great ice cream place, so stop by if you are ever near Mitchell's!  Totally kid friendly with a coloring table and a choo choo train that drives around over head.  Also, it was the first time Kylie wanted a new flavor of ice cream.  She has had bites of ours in the past, but not really all new to herself.  I don't remember the name of the flavor she got, but it was blue and I think it was a mix of cotton candy and marshmallows.

Here is Adler enjoying her ice cream!  Such a cute pic :)

Kylie peeking at this one too!

Kylie coloring with Adler

Another absolute favorite of mine.  Sammy's beautiful eyes looking at Kylie, and Kylie looking at Adler.  It was just like a circle of hope, each child looking up to the next. 

One more hug for Adler before we left...this time no one fell over, but I think we all totally fell in love with both families that we got to meet that day.  So glad to have that opportunity, and we would have loved to of had that when we first went through the IS with Kylie.  At any rate, so glad our little girl can be the inspiration for other kiddos and families out there.

Wednesday, August 8, 2012

Jumping for Joy!

Sorry I did not get a chance to post this yesterday, because we were in a mix between jumping for joy and being a bit emotional...okay, maybe I was the only emotional one, but still :)

I made the call yesterday morning to find out the results of Kylie's EEG.  You know, where you just leave a message with all the necessary information and then request to have the results and to please call back.  You really just want to say, please call me back within 5 minutes, or I'm gonna lose it until then, because I obviously won't be able to function or focus on much of anything until you call me back...or something like that :)

We had a girl from the language study Kylie is in come by for an observation, so that was able to keep me distracted for a little bit.  Though I will say like 2 minutes into her getting starting watching us and tallying Kylie's words that my phone rang.  Ughh...just when my heart starts to hold its breath, I see that it is just CVS calling to tell me my prescriptions are ready.  Really, not now CVS.  Then a bit after that it was the dentist calling to remind Matt of his would work way better if they just called him and not me.

Back to the language study.  I can say that after the 20 or 30 minute observation was complete, we moved onto the girl showing Kylie some large flash cards, you know the real deal...not the animated picture versions we have.  She was checking to see how many Kylie knew.  And then my phone rang, and it was them.

I ran upstairs with pen and paper ready.  I told nurse Jaimie that I was anxiously awaiting the results.  Then she said it.. Kylie's EEG results are normal.  She said it looks like you indicated lots of blinking during the EEG and none of that was consistant with any type of seizure activity.  There was no seizure activity found.  I am still a bit emotional about it just thinking about it.  That is the biggest weight lifted from my heart.

Right before I called this morning, I prayed and told God that I know none of this is for me, and that I needed to give it all to Him.  How hard it is to do that when all we want to do is protect our kids and want nothing but the best for them...happy, healthy and safe....that is what I always pray for Kylie. 

So yeah, I just closed my eyes when she said the results, and I think it took a moment for my mind and heart to register what she just said.  This has been tough to say the least.  So, so many kids that have gone through IS and gain seizure freedom often have relapses and seizures return, it can be days, weeks, months, or even years later.  And not just have the seizures return, but loss of skill and just overall regression.

So to have this EEG and have those results be normal was a dream...a dream that we can still live out for Kylie, that we are making it, we are some of the few, but also so grateful for how far we have all come in this crazy journey called with IS.  I know we will likely have more scares down the's all part of it, but for now we are simply enjoying what we have at this moment and watching this amazing girl just soar!

*One of her favorite things to do...jump on the coach cushions after we toss them all on the floor.

Thursday, August 2, 2012

EEG 08/02/12

I thought I would try to do a quick blog post to recap everything from the EEG today.  First off, last night Matt took Kylie to the store to get a new baby doll.  I wanted her to have something new to occupy her while she was getting hooked up for her EEG.  The process takes a good 30 minutes or so, and that is a long time to a 3 yr old.  I think it was quite ironic that she picked out a Sleeping Beauty princess baby, especially since they want you to fall asleep for a bit during the test.

We tried a few different stores to get some Bendaroos to have Kylie stick to the doll's an EEG.  We couldn't find them anywhere, so I ran to Joann's and found some piping and grabbed all the colors I could find, and had some cut.  There you have it, a doll, EEG leads, and some stickers and you have your very own EEG Baby!

Thanks to an awesome IS mommy friend, she sent me the link to a social story about EEGs.  Click here to check it out. We reviewed that a few times before going in, and Kylie even showed it to the EEG tech on the iPad when we got there!

We did the whole sleep deprivation deal...keep her up until midnight and then wake her at 4am with her test being scheduled at 7:30am.  Yes, we were all so tired, but Kylie...goodness that girl is my little hero.  She stayed up late...Matt had fun building forts with her and letting her crash them down and burying him.  Right about midnight, she said she didn't want to go to  Then the alarm went off at 4am and we went in to wake her...she popped right up and came downstairs.  We put in a movie, she wanted to watch Cars. 

Here she is putting on her sandals as we headed out the door to go downtown to Children's Mercy Hospital.

They have all sorts of neat things at the hospital, and Kylie loves this giant bird that hangs from the ceiling.  You can tell the head is like a disco ball, so he sparkles all over the ceiling and walls...really neat to see!

This is the first time EVER that Kylie has been calm and allowed someone to put a bracelet on her.  In the past it had been a bit of a nightmare, even to go to a birthday was so terrible how she used to meltdown.  Look at her...she's got it on!!  She even put her hand out and let them put it on her...AMAZING!

Just as calm as could be reading some books in the waiting area. 

Starting to look pretty sleepy, and worried now that we are in the room for her EEG.

A shot of the "rainbow hair" we told her about.

This was not the tech we were used to, although we saw her there this morning.  Of course she remember Kylie and us.  I get to bump into her from time to time at the store, so that's is always fun for her to see how great Kylie is doing!

The tech was new, she actually said she was from New Mexico and came here to help out our hospital's EEG department because they had been so swamped.  She even commented that it was quiet, and said she thinks they are all caught up by now. 

She did such a great job with Kylie.  We showed her our little setup for her doll's EEG, and she handed Kylie the crayon that she used on her head, so Kylie could draw the lines on her baby.  Kylie really liked that.  Then she let Kylie use the air they use to dry the glue on her doll too.  You can see her doing that in the pic below. 

Kylie was stressed enough to being hooked up that she wasn't so interested in setting up her doll's EEG, but she did to a couple before getting mad and not wanting to do it. 

She really is a little rock star!  She never once cried while they were hooking her up.  Her eyes got watery a couple times when they put on the leads on her forehead....(that glue has such a strong smell, that it almost makes your eyes burn, especially when they are putting it on so close to her eyes).  She never let those tears fall, she held them in tight and was such a big girl!  We were so proud of her for doing so well through all of that...makes me cry because she is so strong, and so young to go through these things.  She is Incredible, no doubt about that!

She had a hard time falling asleep.  With her anxiety, it is extremely hard for her to be comfortable when people are watching her.  Then you have Kylie with all these wires on her head, in a new place, with me, and some new lady staring at her.  That is so much for a little girl to have going on at once.  She cried and wanted to be all done, and screamed, and settled, but lots of crying for a good hour until she finally was able to relax enough and go to sleep.  I really didn't know if she was going to be able to relax enough to sleep, so I am really glad we did sleep deprive her.  When they are babies, it really isn't as necessary, because the hookup process is so draining for them that they wear themselves out and sleep.

I guess I didn't put why she was having an EEG yet.  On Friday 7/27/12, I noticed her blink kind of hard a few times, but told myself not to worry too much...perhaps I was being paranoid. would be nice if that were true this time.  Come Saturday, she was blinking like crazy.  It began to worry me a lot. After emailing a few of her docs, they said likely it was a tic, and they develop around the ages of 3-5, and often are nothing to be alarmed by.  Her neuro here said it sounded like a tic, but some forceful eye blinking can be the expression of a certain type of seizures. So yeah, this made us panic some.  The wait to get into the Neuro clinic is 2 months, so he said to call on Monday and ask to speak with him directly and to try and send him some video.  After viewing the video, he said he was confident that it was a tic, but let's do an EEG to be absolutely sure. So that's how we got to today.

The crazy after EEG hair.  Matt told her she looked like she just got done riding a motorcycle.  We combed it down to tame it a bit before heading out, and it will be many washings until the glue is all gone.  I'm sure we will be finding it the next couple of days. 

How about this INCREDIBLE little lady just didn't stop there.  Let's see, she got 4 hrs of sleep, and then had the EEG from 7:30am until about 9:45am by the time she was all cleaned up and out of there.  Then she had her last swimming lesson today.  I wasn't sure how it would go with the hectic morning and lack of sleep.  Ummm...this girl needs to be in the books for AWESOME and AMAZING and any other over the top adjective you can think of. 

Do you see that check mark at the bottom?  It says she PASSED her swimming class and can move to Level 1...the level for 5-7yr olds!  Seriously, I want to be like her when I grow up.  Tell me that isn't inspiration!

I just want to thank everyone that prayed for Kylie and us through all of this.  These last few days have been hard and we just want to thank you all for praying with us, for us, and being supportive through it all.  You are all blessings to us that we never imagined to have, but you are all here because of Him.  And it is through Him that we have the most precious gift of all, Kylie.

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