Friday, December 4, 2009

Been awhile..

So, it's been a bit since our last post. Let's see, we took Kylie to see Santa Claus, and she was definitely not a fan. Santa tried giving her to Mrs. Claus, but Kylie wasn't having that either....so we got a pic of dad holding her with Santa, and she still wasn't the happiest. It was quite evident that none of those pics would be on our Christmas card this year, so I dressed her up and got out some Christmas ornaments and decor to entice her with for some at home shots. It is not the easiest taking pics of a toddler....yes, she is a toddler now, and it is amazing how fast it has gone, and kinda sad too. Anyway, she moves so much, and it is almost impossible for her to sit still or get a pic of her smiling....usually she is all sorts of excited when she is smiling, so she is wiggling and flapping the arms in excitement, and that produces nothing but a blurred image. Below is a little slideshow of some of the moments when we were out and about to see Santa and some at home shots.


Below is another slideshow of some random pics we have taken of Kylie. As you will see she loves the dishwasher, and digging through the kitchen drawers to take out potholders, and just about anything she can find. I love the one pic where her face is a bit scrunched...like she is contemplating what to take out next. It is fun and kinda nice that she can find things to occupy herself when I am trying to work on dinner or cleanup or whatever, but it can be a bit hazardous with the random things she throws everywhere...so always on my toes :)



Let's see what else is new. It seems like it has been a couple of few weeks where Kylie will walk up to us and reach up with her arms on our legs, and then look up and kind of yell at us...that is her way of saying pick me up. That's kinda what makes us feel more like mom and dad...having those little arms reach up for you to hold them. Too sweet! She learned sometime last week how to stack one block on top of another...apparently it is one of the milestone markers to work towards. She is beginning to learn more of the labels of her toys and such....if we say where is your baby she will go get it, and then we will ask her to give her baby a hug, and she puts it to her head...I love when she does that! She knows where her belly, and head are...she has known her belly for a bit now, and just learned the head yesterday. She will dance if you say "dance, dance, dance" and clap when you tell her to. It is just getting even more fun to see her interact so much and learn new things.

One of her favorite new games is not just chasing her around the loveseat, but for one of us to sit in the loveseat with her and then the other one sneak up on her and try and get her.....she goes nuts when we do this! She gets so excited climbing all over whoever is on the couch with her and running over us, and just squeals and cracks up. It is our favorite too :)

We haven't posted this info yet, but some of you know that on Nov 3rd (the day before Kylie's 1st birthday), I saw her doing some not so normal things with her head, and her eyes deviated, and needless to say it was a very scary few moments for me. I instantly knew it wasn't anything normal or anything I had seen her do before, so I quickly grabbed the video camera and started recording. I was crying as I filmed these odd episodes and grabbed Kylie and hugged her once I stopped recording. I have seen enough different seizures through my own research and efforts to better educate myself on what could follow IS, so I knew this was something to be concerned about. Once I got the video uploaded and onto a viewable site, I sent it off to some neuros and we got some conflicting interpretations: all but one doc said it was definitely not normal and it was something that needed to followed up on with a VEEG to rule out or confirm seizures. Unfortunately the one doc that was not concerned is Kylie's neuro, and our children's hospital can not get her in for the test until March 22nd...yep, March 2010. So we will be trecking to St. Louis Children's Hospital for the test, and our doc here told them he wants her to be hooked up for 4 days. Oh my goodness, I can not imagine having her hooked up that long, and she will not be able to leave the room and she will have her head wrapped up with all the wires hooked to her head, plus be in a new environment...and a hospital at that. It will be tough, but we need answers. She has had 1 day where I saw her do it time and time again, but typically she will also have days where we see it a handful of times, or not at all. We are hoping that these odd movements or episodes are present when she is hooked up, so they can tell us if anything abnormal shows up when she does them. If she does them early on, then chances are she will not have to be hooked up for so long.

So yeah, as the date gets closer I will post and ask for some prayers for our trip to St. Louis, and let everyone know how things are going. This is so hard because so many think we (me especially, mom) are just being paranoid or that we need to stop thinking that Kylie is like other kids with IS or whatever. If you have not been in this situation, you can not truly understand how difficult, draining, and overwhelming things can be. This isn't like other diseases or things where there are a great number of stats that give you a clearer picture of where your child will end up or how things will turn out...every case is different so there is a lot of unknown. It isn't easy having a child that has been through something as crazy and unpredictable as IS, but we are doing the best we possibly can and want to make sure Kylie is okay, and we will do whatever it takes to assure that. If that means mom and dad are crazy until we know different, then that is okay, and we know we will get through it. We will deal with things the best we know how, and do what we can to remain grounded...Kylie makes it easier with how silly she is and all the smiles she gives us. She is amazing, and I can not say that enough. Being her mom and dad is the best gift we could have ever received. God loves us so much that he gave us the beautiful, amazing little girl, and nothing is greater than the love He has for us.

So yeah, that is our update for now. Enjoy the pics and everything along the way :)

2 comments:

The Adventures of Bobbie and Zach said...

Being an advocate for your child should never be called "crazy" or "paranoid". Kylie is just as lucky to have you and Matt as parents as you are to have her as a daughter! The love you both have for her is so apparent and it brings tears to my eyes just thinking about it. You all are constantly in our thoughts and prayers and will continue to be!

Love, Bobbie and Dylan

baby trevor's mommy said...

I haven't braved Santa with Trevy yet this year...

but tomorrow night the big kids, J and I will see the jolly ol' guy AND catch the new 3D Christmas flick!

...danielle

 

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