Friday, December 18, 2009

Go figure

Well right now we are really stuck and feel very confused about the VEEG we just had. For one, we are not confident that a true event was captured. You see, you have a button to push when you see something suspicious, and they tell you if you are not sure it is one go ahead and press it...so we did. We also each time, we are not sure this is one, but we think it could be. That is all the happened the whole time, maybes, but no definites. We reiterated this to the doc and techs, and they said there was no seizure activity. That is exactly what we want to hear, but what if those maybes were all truly no? There is no way to know for sure, but when they say they are sending you home there is nothing more you can do. And what about the fact that there is no contd investigation on their part to determine what is going on with Kylie...you know, giving us answers so we can breathe.


Neither one of us (especially me...afterall, I am the crazy one) are sure what to do right now. You see, last night Kylie tilted her head to the side last night time and time again, and one time she almost fell over. What the heck is going on with our baby! I am soooo crying right now. Matt and I were like sick last night, because she did it more than we have seen her do since she started this on Nov 3...you know, the day before her 1st birthday. Go figure, she did not do any of this the entire time she was hooked up...so what do we do? where do we go from here? Going through a VEEG with your child is very draining emotionally, exhausting mentally, and stressful for Kylie and us. Can we put her and ourselves through this again in 2 wks for our apptmt in St. Louis or do we cancel it?


You just look at how sweet, beautiful, and silly she is and you ask yourself: am I doing everything I can for her? is she and will she be okay? I will leave with some pics, since I am not really in the mindset to keep typing about all of this.



Playing with mama
















Napping on mama














After all the electrodes were taken off and I combed out as much of the glue as I could before her bath.














Poor thing. This is the lovely rash she acquired while she was in the hospital....our going away gift.














Some pics of Kylie after we got home. She decided not to nap afterall, so I thought I would make the most of her being silly and just running around and get some pics of her.






















We decided that since Kylie resembled that of a Glow Worm with her head all wrapped up for the VEEG that she needed to have one of her own. Here are some pics of her with it. She loves it! Her face lights up with a smile when the Glow Worm lights up and plays music.











3 comments:

baby trevor's mommy said...

I'm so sorry, hon. I hate limbo land.

Was her EEG spikey at all?

If the events are getting more frequent and more violent I would defiantely seek a second opinion. The funny thing with seizures...is if they are originating too deeply in the brain than sometimes the info acquired by the EEG is not reliable. EEGs are NOT perfect.

Anyway...

Sending you cyber hugs...

...danielle

MJStump said...

danielle, yes limbo land pretty much is no fun at all.

no her EEG was good, so that is great...rules out other things. right now we are still wondering what to do about St. Louis...she had that day home from the hospital that was really bad, and hardly anything since then. some other new and odd head things here and there....i wish she could just tell us if she is okay.

yes, i have heard that from someone else, about how if the seizures are deep enough in the brain that they won't show up on the EEG...nothing ever seems to be cut and dry with any of this.

hugs to you,
jody

Gina Frigault said...

So sorry I lost some contact when I lost the blog address. Nikki just sent it to me yesterday, but I am just now seeing it.

Virtual hugs are being sent to all of you. Limbo or not, you are in a very difficult and uncomfortable place. May God and Kylie's angels give you the strength and guidance to persevere as you have been - and may your tears be wiped away in the New Year.

Kepp enjoying the snow with Kylie and mark the memories. Miracles are not impossible.

Love you all, Gina

 

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