Friday, January 15, 2010

The last dance

So...while we were having fun with our family dance off last night, and it was a lot of fun too...just picture the three of us dancing around and being so silly. I wish there was like a camera mounted on the wall and filming those moments, because it was a good night for us.

But yeah, back to when the record started to skip (the record being our hearts), and Club Stump came to a close upon seeing the not so welcome odd head movements. It is amazing how much a of kill joy that can be for mom and dad. There really isn't a better way to say how much it just sucks when we see these things, and we pray that Kylie will be okay, and somehow be unscathed by it all....can't say that will be the case for mom and dad, but we are trying.

So yeah, it was during the time I was working on filming Kylie's silly, crazy, and adorable dance moves, which I like to refer to as the I can't dance dance moves that I got from my dada. Sorry hun, I love you but you have a bit of work to do on your dancing :)

For some odd reason I stopped filming when I saw her do it...some sort of automatic reaction where I wasn't thinking to keep filming to save and show the know that guy that says it is behavioral or self stimulation..blah blah....I know my baby better than anyone, but that is a whole other story and then some.

I wanted to edit the clip and post just the dancing part of it, but Matt said no...that I should post it and let everyone see what looks like nothing to the untrained eye, but is definitely what causes our hearts to skip a beat and sink into our chest.

Once I realized that I stopped filming, which was a matter of a second or two, I immediately started filming again. Here are both videos back to back. The end is so sweet, Kylie being silly and so sweet.

But yeah, here is the record stopper. See if you can pinpoint what and when the dance floor got cleared.

Amazing how when Kylie first started up with all of this (Nov 3), it was happening a few times a day, then like 1-2 times a day, and then maybe a couple times a week. Then it seemed like nothing for a long time, and nothing when we finally got our VEEG...that is until a couple hours after we got home from the hospital that evening (Dec 17), and it seemed like she did it a million times. We were both like sick to our stomachs and ready for this to be over. I mean my goodness, we have days and weeks go by where we don't even think about things too much ... I mean it is always on our mind and more than likely always will be, but not in the way it is when we see what scares us.

Sorry, I started to get off track there. So yeah, it's like this thing IS always haunting us, and that is just really tough having those images before us...reminding us of what could be. So after our return home from the VEEG, we didn't see anything again for 12 days (Dec 29), and nothing again until just a couple days ago (Jan 12). The problem we are seeing right now is that there isn't much of a gap between when we are seeing them. She did it twice again on Thurs (Jan 14), and 3 times today (Jan 15).

Needless to say that if this continues then we very well may be calling up the docs in St. Louis and trying to get on board for a VEEG there...hopefully we can get in quicker, while she is still on a pattern of doing these more frequently. I know we cancelled our apptmt for Jan 4th, but the good thing of it is we never saw anything during the days we would have been there, so we know it was a good decision.

I will leave you all with a pic I took of Kylie a couple weeks ago and I just love is the sweet, innocent little girl I see when I look at her. Love her so very much!


JSmith5780 said...

I don't know. I watched the video a few times. It seems almost absence like. Definitely worth asking about. Do you have a doctor that will look at the video and give you an opinion?

MJStump said...

I sent it to the doc in St. Louis, and he just confirmed that it is consistent with what I have told him and sent him before. He can not say more than that without seeing her and doing a complete evaluation. He also mentioned that he spoke with the scheduler there and she told him that it will be a few months before our insurance will approve a second opinion. Nice.

As far as the docs here...they have seemed to write us off as far as anything else going on with Kylie. We know something is up, and have to just see it happen.


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