First I would like to say thank you to all those who contacted me that understand where I am coming from. And please by all means, don't stop! It's very nice to have someone say, I know how you feel and it sucks! So even if you child doesn't have Epilepsy, if they just have something else going on and you have the same feelings I listed in the post down below, please e-mail me. We can swap "war stories" and offer each other support!
Next order of business.....my outlook is much brighter today. I wouldn't go so far as to say I am back to 100% optimism but I am getting there.
I want to go into Lily's EEG a little more. I believe I mentioned in the last post that she was misfiring constantly in her sleep. This unfortunately has left another one of our questions unanswered. Lily can become very active in her sleep. I had asked her Neuro how we could tell whether it was just normal REM or if it was seizure-like activity. She said if we end up doing an EEG we should be able to tell. Well, they cannot tell. Because her brain is misfiring so often they can't "see" the brain REM waves the way they need to to determine whether it is REM or not. Sucks, but doesn't change much. So we still get to jump every time she moves. But honestly even if they could have been able to tell, it still wouldn't matter. I am learning rapidly that brain waves can change at any time for reasons unknown. So had they be able to view the REM it wouldn't mean that she was always having REM. I have decided to just take care of what I can see outside her body and let the Neuro's deal with what is going on on the inside.
Lily was taken care of in the hospital by Dr. Holler. You may remember from my previous posts that we LOVE Dr Holler and as usual she proved that our love was not ill-placed. She was very good at letting us know what was going on, be up front and honest with us while still being reassuring and comforting. I wish that some medical schools would take a video of her in action and tell their students that THIS is what you strive for as a Dr. Also I was outside sitting on the curb, messing around on my phone as Dr. Holler and her nurse were coming out of the hospital and crossing the street to go to the medical building. I didn't see them but they did see me. Now I am sitting on this curb, crossed-leg, with my head bent and I assuming I looked every ounce a woman in despair (which I wasn't. I was still ok at that point) but my head was bent because my phone was sitting in my lap. Any way, I hear a compassion filled voice say "hey, are you ok?" Yeah it was Dr. Holler making sure I was all right. I said yes that I was and quickly realized why she had stopped. I picked my phone up off my lap and waved it at her. She gave me a big smile, nodded and continued on her way. I am still very much touched by the gesture. There are not many Dr's out there that would take even a few minutes out of their day to do that. She is a great Dr but also an amazing person.
Another surprise that I had that day was Lily's Neuro showing up in Lily's room. She was plain clothed, with no bag of tricks (tools or doing a neuro eval), ect, ect. It was weird seeing her like that because I am so used to her having a lab coat on. She wanted to come in and see if we were all right (not Lily, she knew Lily was ok) and let us know about what was going on. I was really surprised to say the least.
Ok moving on.....So Tracy and I (despite Dr. Holler telling us NOT to do this, that is wasn't necessary as we HAVE woke up when she has been seizing and she has no long term damage, etc, etc) are sleeping in shifts. I REALLY cannot take this waking up to her having a seizure anymore. It's just the not knowing how long she has been seizing that I can't take. So I will sleep after Tracy gets home from work until midnight or there abouts, then I get up and he sleeps till 6-7 am. Then I take about an hour or so nap till he leaves for work. Yeah I do realize that it sounds crazy but here's the deal. Before I was getting maybe 3-4 broken hours of sleep a night. Same with Tracy. Now we are both getting solid undisturbed sleep and sleeping longer than we had before. It was amazing for me to lay down this past even and actually just be out, not waking up at every little sound. I have REALLY missed restful sleep! So I am one happy camper. The only thing that sucks is Tracy and I are not going to get a whole lot of time to spend together, but hopefully we can make it for that on the weekend.
Lily started Lamictal today. She has only had one dose and tonight has been sleeping peacefully with not much activity in her sleep. Hopefully this is a sign that we are on the right track!
And a couple things about the Blog I would like to let you know. First, at the top you will see a tab labeled "About Lily". If you don't know her back story check it out. Second, I am going to be posting another page like that one, but this one will have resources on it for special needs families, so make sure you bookmark the blog and come back in about a week or so to check that out. And finally when we hit 6000 hits on Lily's blog (we are almost there) I am going to host a giveaway, make sue to come back for details on that!
As always thank you for reading! And now you know the rest of the story! Good day!
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