Hand in hand, down the rabbit hole.

Epilepsy is still on the table as a diagnosis for PP's unusual behavior, but until recently I had no idea how we would move forward in the diagnostic process. No doctor will do a sedated EEG on a child who is taking anti-seizure medication because they wouldn't be able to get any brain wave readings strong enough to make a diagnosis or plan of care. Medication and sedation impede the important brain waves needed to draw conclusions about the child. We will not stop the anti-seizure medication because it is helping a little, and doing an EEG while the child is awake is about as effective as doing it while they are sedated. The magic spot is sleeping naturally; the brain is incredibly active when we sleep so the misfiring between neurons would be very vibrant and more acute to draw a diagnosis from.

PP has an appointment with her Neurologist (the one I am not quite fond of) next week. I have not been looking forward to this appointment because I've not been happy, or felt like questions have been answered, after any appointments with this doctor. Seeing this doctor makes me uncomfortable and I really want to cancel the appointment, but I won't do so because I think it's worth it to get every opinion I can gather. I've never had this problem with any doctor before so I was unsure of how to handle it. I have tried to get PP scheduled with different Neurologists, but I always get some half-assed excuse to why I can't see them. I asked a couple non-neurology doctors and therapists to help me out, and what I got was the number to a place called Minnesota Epilepsy Group.  I waited a while to call them. I am not sure why. I have such a weird feeling about the whole thing. Finally, after tossing out my apprehension, I called these people expecting to just get an appointment with a doctor to see what our next step was. Instead, I ended up scheduling PP's first inpatient EEG for the third week in December.

I think one reason I was so hesitant to call this clinic is for the fact that I don't enjoy the feeling that I get from telling someone all about PP when they have never met her before. In the medical world, things are not sugar coated. So when the question, "Tell me about Penelope." comes up I really just want to hang up. I can't tell them "Penelope is so sweet, she likes to read, she's good with a magna-doodle and she really likes cars." because that is just fluff. They need to know the ins and outs, what her other doctors say about her, and what I see her doing on a daily basis, using medical jargon. I think what really gets me is the question, "Developmentally, where is Penelope on the charts?" Ugh. The numbers. They make me shake. Reading doctors notes can be one of the hardest things a Special Needs Parent has to do. It makes you feel like no matter how many times your child can do a recently learned skill, they are still behind their peers and there's nothing more you can do about it other than what you're already doing, which is EVERYTHING. I was proud of myself though, because without stuttering too much I was able to tell the nurse, "Well, gross motor development is at 18-20 months old, language is between 6-7 months, fine motor adaptive is at 15 months old, and personal-social development is between 12-14 months old." and her physical measurements, which are equivalent to a 4 year old. I just celebrated my daughters third birthday so now it seems like scheduling a simple doctors appointment has thrown me into a tizzy. I hate the numbers. 

UGH! 

This EEG is not so simple, though. As I said before, it is done as an inpatient. We will be over at Children's Hospital in St. Paul which is a brand new experience. We have never stayed as an inpatient there before! EEEEKK! We are also not guaranteed a private room. Every room is set up to house two patients at once, with some sort of divider, and I swear to glob if we get a roommate I am going to barf. PP is going to stay in the hospital at least three days, and up to ten days, so I have to put on my Super Mama britches in order to keep myself and PP sane. Oh, I think I forgot to mention that I will be staying with PP in the hospital. I can't expect the nurses to keep the cap and electrodes on PP's head for 24 hours a day. PP will need 100% supervision. I am grateful that I won't have to be cooking or cleaning like I do at home during this stay; I can really focus on PP and try my hardest to make this experience as pleasant as it can be. I want to make a great attempt to limit the amount of negative memories from this test because I have an inkling that this will not be our last inpatient EEG! 

I don't really know what the outcome will be. I've learned to not let myself expect anything because if I do, I will never get what I expected. That can be disappointing and/or exciting so I will just save myself the extra energy and go into this with a clear mind. If I really need to expect something, I guess it will just be answers. 

That's all I really want for Christmas; some answers to the mystery of peculiar Miss PP. I think Santa would approve. Hopefully, I am on the "Good List" this year! 

Wiggly hugs and slobber kisses

XoX