Keeping spirits bright: just call me Mama Jingle Bell.

I'll be honest, I would rather be enjoying my beer in a semi-comatose state while watching my favorite movie. You could say I am celebrating the Winter Solstice a little early, but some people have told me that tomorrow the world will end so I am trying to get in all the good stuff, just in case! On the other hand, if it doesn't all come crashing down tomorrow, I would like to have this post written and read tonight! My trade off is that this post will be half assed...sort of.

No frillies tonight.

Last weekend:
Papa Chris came down with some wicked stomach pain at the worst time of night...when he was sleeping. It woke him up and was bad enough to warrant a trip to the ER, which eventually shed light on some gallstones that had to be removed. He scheduled a surgery for Thursday (today) to have his whole gallbladder removed and he will be getting some of the gallstones next week as a souvenir for the whole ordeal. Yeah, it's gross and funny and it calls for a lot of "GAHH CHRIS" from Mama Lace.

Monday:
Normal day as far as I can remember.

Tuesday:
PP and I made our way over to Children's Hospital in St. Paul to start her inpatient EEG at 9:30AM. We met Chris Kluwe, the punter for the Vikings, which was a REAL BIG treat and I don't pay any attention whatsoever to the Vikings! Everything was going just fine until about 6PM. PP came down with a fever and a rash-like patch on one side of her face which led to some PP-unfriendly tests to figure out what was going on. She and I had a very terrible night. We hardly slept. Collectively, I am guess-timating that we got about 4 hours of sleep and we were both miserable the entire time. I ended up sleeping in her bed and half my body was numb all night, but being tired trumped being numb. Ish. She had a hacking cough, booger-full nose, a high fever and needed oxygen a few times. Ish.

Wednesday:
Santa came to visit with some Marines, but PP couldn't get anywhere near him because she was quarantined to her room. He HO-HO-HO'ed at us from the doorway. Santa was not willing to put on a yellow paper gown, mask and gloves so there would be no sitting on his lap to read off her Christmas list. This was her first time seeing Santa.

Shortly after Santa's disappointing visit, PP did more testing to see what was making her so sick. We were informed of test results throughout the day, all of which came back negative for things that make you sick. The doctors ruled it a viral infection, stopped the EEG test for various reasons, and decided to keep PP in the hospital one more night to monitor her oxygen/blood levels. Sadly, we didn't get any useful information from the EEG. On the bright side, during the day PP made vast improvements from the night before, so I was counting a better night than the previous. At least she didn't have to sleep with electrodes stuck to her head again. We ended up having a much better night, only waking about 4 times for inadequate blood/oxygen levels that she quickly corrected by herself by taking a deep breath.

Thursday (today):
Papa Chris had his gallbladder removed early in the morning. PP woke at 8AM making me a very happy Mama. WE GOT TO SLEEP! We hung out all morning at the hospital. PP was at her baseline: running around, playing, eating and drinking normally, being cute. It was such a relief to see her back to her old self. I hate seeing her sick! We were discharged around 1PM today. We happily went home, did some dailies and then we went to go visit Papa Chris who is recovering from his gallbladder surgery with his amazingly accommodating dad and step-mom. PP is scheduled to return to the hospital on Wednesday after Christmas to take another try at the EEG.

At this very moment, PP is sleeping soundly. Her cough is subdued because I finally figured out that a teaspoon (5mL) of plain old honey works wonders for a hack-an-a-half. Papa Chris is probably playing video games or doing something tech-y with his Papa, so I know he's having a good night. I am just finishing up my much deserved (second) beer and listening to the new Father John Misty album, which is too wonderful to describe with words...I'd have to dance out my love for this album. I am trying to figure out my favorite movie, but all I know is that it has to be good if it is going to potentially be the last movie I ever see.

Doomsday, Solstice, Friday, whatevs.

That's it.
XoX

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