Wednesday, April 18, 2012

All for 2011

Yay, finally catching up and finishing posts from Dec 2011! Uggh, too bad the start of this one was another but something to celebrate. A trip to the ER at Children's Mercy :(

Kylie had a high temp (103.6 or so) and with her epilepsy history, she has an increased risk of febrile seizures, and that can also lead to return of seizures...we don't want to hear that "s" word, and I don't like to type it, let alone say it.

In addition to the high temp, she started doing something weird with her mouth, like an involuntary repetitive movement. Matt had just run to the store to get Kylie some more fluids and popsicles....anytime she is not well, he runs to get her anything he can possibly find to help her. Yep, he loves her LOTS!

Anyhow, I had pulled out the video camera and Matt saw me staring at her when he got back, and just knew that I was worried about something. She continued to do it, totally had us both worried. I got it on video and uploaded it and sent it off to her neuros (one here and one in Cleveland). I gave her some more motrin and then we packed up a few things and headed to the ER.

Did you know that possible seizure activity gets you nowhere when you arrive at the ER? Don't they know that seizures with kids that have or had IS can be so subtle, and we need answers like pronto?! Anyhow, she was so tired, she fell asleep in Matt's lap, meanwhile I was hitting refresh on the iPad to see if either doc had happened to check their email late at night and messaged me back...not so much.

We finally get back to the triage area, and Kylie's temp had gone down. Then we go back out and wait some more. We had not seen anymore movements after being in the triage area, but saw them off and on the whole time we waited :( I do not think it was a coincidence that they subsided when her temp had come down.

The resident doc we saw said, well she looks okay, so I think she is fine. Umm...that's it. We showed her the video, and she didn't comment. She asked if we wanted to see the attending ER doc, and we said yes. He agreed that what she was doing in the video was odd, possible seizures, and said to keep an eye on her. So we did. Both neuros finally got back with me and each had a different opinion.

I have seen these same movements again following all of this. I think they may be related to her body being overheated or tired. I don't know for certain though. I'm good to not see anything odd EVER again...makes my heart stop, then I stare and watch her every move, then she gets worried...not fun at all.

Anyhow, here was Kylie and Matt reading some books in the ER that night

Tired girl and dadda, waiting for the doc to come back.

On a much happier and brighter note, I had made Kylie a blanket for Christmas and she actually used it in her bed! She never ever would use a blanket to sleep at night, and would scream at our attempts to cover her it just wasn't right to her. She got more comfortable using one on the couch, and I hated to think that she would be cold at night. I was amazed when she saw the blanket and was eager to sleep with it at naptime! She has since gone on strike and won't let us cover her up, but we still try here and there :)

Kylie's Great Aunt from Hawaii had sent us a package at Christmas and it had a present in it for Kylie. She had just woken up from her nap when I told her that a present arrived for her in the a little sleepy at first, but that soon changes :)

It's a Leap Frog toy that helps with Counting and Drawing. This way kids can practice drawing numbers and cute! She loved it and I loved that it was educational and fun too!!

Look her first number 2!

Kylie's Great Grandma Frances aka "Frandma" has a dress up box that Kylie loves to play in. On this one particular day she wanted to dress up to be a bride. It was so cute, especially when she told her dadda that she was getting married. I just thought how much I know I will cry when that day girl all grown up. No need to rush on that though!

There goes the bride

We had long awaited hugs from Kylie, as that was one thing that she wasn't comfortable with. One day she was still sleepy after Matt got her up from her nap, and she came over to me. I asked if she wanted to sit with me, and she totally curled up and just cuddled....never happened before. I wanted to jump up and cheer, but totally wanted this moment to last forever. I whispered for Matt to grab the camera, and this is what he got:

Proud of the snowman plate we made together!

Every Christmas Bass Pro has their Winter Wonderland set up with all sorts of activities for the kids, and one of the weeks they let the kids decorate cookies. Here is Kylie squeezing out some icing onto her cookie.

All done and ready to eat....after dinner of course :)

We met our friend Dylan there, so cute together!

It was a long road, but I was making some good progress on some artwork I started on for our church. I would take Kylie up with me and she would either play around where I was working or she went to the playland area in the church. This was a picture I nabbed of her just as we were leaving one day. She just looked so cute with her owl hat on.

After like 9 months or more I finally finished the artwork...yay!

What a great way to finish things off right near Christmas time was to give back to our Children's hospital. Our church, Kaw Prairie Community Church, had a generous donor and they gave gift cards to families that had children with special needs or those in need. We decided to use the gift that was given to us, and purchase gifts for children in the hospital.

Matt called and asked if there was any way they could let us know how many kids were on the unit Kylie was on when she was diagnosed with IS, and any additional info they could provide. They gave us approximate ages and gender of all the kids up there, and we went shopping!

Kylie had so much fun helping us shop for gifts and then loading them up in the wagon at the hospital.

They told us to call them when we were ready and they would pick up the gifts. We were kind of bummed (not totally surprised) that we weren't allowed to help deliver them, and Kylie was more upset...she kind of pushed the wagon away a bit and walked away. Poor thing, it was kinda cute though.

We were so glad we could do that...something we have always wanted to do since being there with all that stuff. Another thanks to our church for helping us give back to Children's Mercy!

The day after Christmas, we decided to go bowling. Kylie was so excited to go...we had been a couple times before and she did really well! Here she is getting her ball to throw down the lane.

Saying "cheese" of course

I love pics like this...just look at those little feet of hers!

I also got some video of her favorite part is when she cheers for herself :)

Lastly, we went to some friends house for New Year's Eve, we let Kylie stay up until 10pm...woohoo! Anyhow, when we got home and Kylie was all in her jammies, I wanted to take a pic of the 2 of us for New Year's. So I am all excited to have a cute family pic, Kylie is interested in whatever she is playing with, and Matt is being a goofball.

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