No one is invincible....

Well over the weekend Willow had a seizure.  Not the absence seizures she has had over a year ago while in the hospital, but a leg stiffening, chest tightening type of seizure.  My mama gut told me that was what happened, but I really didn't want it to be so.  Let's be honest, no one wants to see their child go through a seizure, or not be well.  Yet we have to watch Willow on a daily basis to see 'what may happen', we have to be careful of the extra nap today (while most parents love the extra nap, lets remember for Willow it means her head hurts and she isn't doing well).  We have to watch the humidity levels to see how high they are getting so as to know whether errands can be run that day or not, or whether it is outdoor fun or only indoor fun that can be.  It is a complete overhaul of ones life and well right now it sucks.

So during this seizure, I was able to come to enough you could say to remember it was wise to get it on video.  It is only the tail end, but apparently enough for the doctors to believe me in what I am telling them.  We called the on call pediatrician on Sunday afternoon, at this point I was kind of wondering should I be doing more for her after that seizure, she doesn't typically have them, the last time she did there was an increase in pressure.  Yet she seemed like she was fine and nothing was bugging her, so it was so hard to decide what to do.  I made the call and they felt I was okay to wait until the office opened Monday and to bring her and the video in.  Well, he confirmed it was a seizure (though tried to tell me it could be a benign thing as well - in order to make me feel better.  But when asked what else it could be, he had no real answer - lol, nice huh?)  So he sent the referral in for the EEG, I was told the best thing to do was call neurology to have it set up after the order was placed.

So I call neurology and set up the EEG, then call her neurosurgeons office to let them know what was going on.  The ped, felt we could wait until after the EEG to bring in neurology or neurosurgeon but Jon and I felt we should at least let her NS know.  So when his nurse called me back later Monday, she was a bit upset that she had not been paged earlier in the day and wanted a CT done immediately.  She really wanted an MRI but for Willow those are sedated and take a while to get in, so a CT is much easier to schedule.  Well that happens today - this afternoon.  I am quite afraid of what it may show to be honest.  I don't want it to be anything but a fluke that she had this seizure; but I know that isn't the case.

Call me selfish if you want, but we had 13 months surgery free, and full of other crazy ups and downs and fun stuff with the kids and such. We were finally able to breathe and live again.  I know so many of you out there just don't understand and honestly that is okay too, I wouldn't wish you to be able to. But I do want you to remember that when you see me post events for the MI Pediatric Hydrocephalus Foundation, that is how you can help not only Willow, but others like her and our family.  I am sure there are people out there who are tired of me asking for help for events, or fundraisers, but you need to understand it all starts somewhere and this local effort made today, could turn into something larger like the Breast Cancer Awareness we all know and one day lead to better treatment or even better a cure.

Please keep Willow in your thoughts this week as we go for her CT today and an EEG on Thursday to see what is going on.  Please pray, send healing energy, good vibes that we are not walking down the path that leads to surgery, but instead a slight detour to remember that no one is invincible.

Thanks for making it this far. :)

Here is a video of her seizure:

Our donation site for the MI PHF as well, if you ever feel like helping:


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