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 head...like 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 bed...lol  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 party....it 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.  Ugghh...it 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.