Sunday, April 17, 2011

We're dancing

Who would have ever thought that we would all be dancing now!

Yep...all of us :)

I can bet you anything that 2 years ago on this very day, dancing would have been the furthest thing from our minds. It was then that breathing was hard to come by, because we had no idea what was going on with our beautiful baby girl. It was around this time of day that we waited by the phone for a room to come available at our local children's hospital. It was also when our little girl was continuing to have some "episodes" as we called them, and the were increasing in frequency and duration.

Just a few hours later we got a phone call and headed to the hospital. We went to the Neurophysiology Clinic where a tech mapped out some areas on Kylie' s little head, and affixed some electrodes to all the markings. Kylie was quite freightened by all of this, as were we. Only thing was it was expected for her to scream at the top of her little lungs, and we had to be strong and comfort her while we were kind of falling to pieces. Not knowing where these pieces were falling....they were definitely falling and we were going right down with them.

The tech put in a call to the doctor and he came down to take a look at the current EEG results, while Kylie was still hooked up. He told her to go ahead and stop the test, and to send us back upstairs to Kylie's room. I was not in the room at the time, but Matt was in a panic once I got in the room. He said he just knew it wasn't good...that he could tell by how the doctor responded to the tech.

I told Matt to calm down and just wait...we needed to hear the news before jumping to any conclusions.

It didn't take very long for the doctor to come up to Kylie's room to give us the results we had been waiting for....the results we didn't want to hear...the kind that happen to other babies, but certainly not yours....never yours.

He was very blunt and said "This is not is Infantile Spasms." I think we were both immediately sick at that time. Then he went on to say the medication to help stop Kylie's seizures is very expensive. He said a 3 week supply is about $22,000! Yeah...that was just as crazy as the diagnosis. Fortunately there is an organization called NORD, and they cover the portion that insurance does not cover, so we did not have to pay anything out of pocket.

I know you are probably wondering why I am going through all of this again, when you can read it all here and in the posts that follow. Well, because we need to remember where we were and look at how far we have come. Because boy, we have come a long way....more than we could have EVER imagined. We thank God every single day for the blessings he has given Kylie and all of us...our little family.

It is amazing how quickly your life can be flipped upside the matter of just a few moments. It was those little moments, those subtle movements that I noticed Kylie doing just 3 days earlier that told me something just wasn't right. We never would have imagined the path we were sent down with Kylie in the days, weeks, and months to come.

It certainly has not been easy, moments have definitely been scary, and exhausting, and full of all sorts of emotions. I can honestly say it was all worth it to get to where we are now....but if there was a way to make the route smoother, we would have totally opted for that :)

There were all too many times when I thought: I just can't do this, I don't know if God knows this or not, but I am not cut out for all of this. We have learned so much from everything that happened to Kylie and our little family. I never knew how much a little person could teach me about life, how I see things...especially myself.

We are very aware that things could have been much different Kylie. Our journey has been full of ups and downs...enough to make you sea sick. One thing we are fully aware of is that the journey could have been full of many more obstacles....ones that would totally throw you overboard. We are very grateful for what we have, where we are, and how very awesome Kylie is doing right now!

I'm sure there will be more challenges ahead, but right now I want to do all I can to focus on the now.

Just look at how beautiful she is! Simply amazing!


Rochelle said...

We are dancing right along with you guys. She is amazing!

MJStump said...

Aww...thanks Rochelle!

The Adventures of Bobbie and Zach said...

Ditto to what Rochelle said! Although in D's case, dancing is just jumping up and down a lot! We're so lucky to be able to watch Kylie grow up along with you! She's awesome!

Bobbie & Dylan

MJStump said...

Thanks Bobbie & Dylan! Looks like we are going to have ourselves a dance party here pretty soon!


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