Lenore is 3!

Lenore is THREE (yesterday)! Things have been really busy with my cousin's wedding this past weekend, and (subsequently) my sister, niece, and nephew are staying with us for a few days/nights. I'm a day late.

Lenore at 3 Years

MoanaElsa (Moana's necklace + Elsa's dress with train)

Her stats (we will get at her doctor's appointment on Friday):

Height: 38.15 inches [77th percentile]

Weight: 36 pounds 6.4 ounces [91st percentile]

Her doctor's appointment went well! She didn't have to have any shots or finger pricks (Lewis was really concerned she'd have to have a finger prick). We just talked to the doctor about things, and he checked her out. All looks good!

What she's up to:

• She is in 3 day 3s (half day) preschool at a new school this year and loves it. She bounds in the car every day at carpool, wanting to show me what she's made or to tell me what she's done that day. 
• She loves to dance and sing. She'll ask me to sing 'that pink circle' song or 'that song about a blue rectangle in Gramma's room,' and I have to make up songs on the spot to her requests. Some times are easier than others. :)
• Her favorite things to watch are Mickey Mouse Clubhouse, Moana, SING, and Frozen (which is becoming slightly less and less).
• She loves wearing tutus and dresses and crowns and necklaces and bows in her hair. She loves pretending to be her favorite characters (Moana, Elsa, and Anna). She loves having her nails painted, and she lets me cut and fix her hair. [It's kind of fun to discover the sides of myself that I never really had time/interest/confidence in while growing up.]
• She likes to play with Lewis, but Lewis doesn't always like her to play with him or his toys. They will fight and scream and chase each other, which is hard. They are sloooowly starting to play better, which gives me glimpses of what it can be like.
• She loves to play outside and isn't afraid to get dirty. In that way, she and Lew play really well together. She likes to ride her tricycle and to play with the neighbors.
• She is potty-trained! After 2-3 false starts over the past 9 months, she's finally stuck with it and is doing really well. She was almost there when school started, but I kept her in pull-ups the first two weeks, just in case. Then we had one intensive weekend of only-underwear-commitment training (which she initiated), and we haven't looked back. We've had a few accidents when she's gotten really busy playing, but she is doing great. It was a lot easier than what I remember with Lewis. :)
• She is still napping 2-3 hours in the afternoon. I can see it waning a little bit some days--sometimes she will stay up in her bed past her 7:30 bedtime, but sometimes she still sleeps a lot. I'm trying to stick to her nap schedule as much as possible. It certainly helps with me not working this year--I can get her from school, do lunch, and get her down for nap early enough that she can wake up on her own before it's time to go to the bus stop to get Lewis. Sleep is everything.
• She also sleeps with a crib tent, like Lewis did. She started climbing out 3ish months ago, and she didn't do well in her toddler bed (getting things out of her closet, pulling off books, etc.). I think by the time the crib tent arrived from Amazon, she was STARTING to get the hang of it, but the peace of mind from the crib tent (safety/containment/etc.) is better for right now. 
• Along with climbing out of her bed, she is fearless on the playground. She will follow Lewis up any sort of climbing structure, and she might fall but pops right back up again. Fearless. I'm considering getting her signed up for a tumbling class or something similar because I think she would love it.
• She is pretty manipulative, I would say. If you tell her not to do something, she will tilt her head to the side and say 'But I'm just touching it' or 'I'm just looking at it' or something similar. She does NOT like to be told what to do or not do. :) It can be challenging, to say the least.
• She is wearing size 4T clothes and size 10 shoes.

Lenore's Favorite Things (Age 3)

What is your favorite...

...color?   Yellow

...toy?   Tomato (from her kitchen)

...stuffed animal?   Dog (from IKEA)

...thing to sleep with?   Frog blanket

...fruit?   Watermelon

...vegetable?   Potato

...cereal?   Lucky Charms

...thing to eat for breakfast?   Pizza

...thing to eat for lunch?   Pizza

...dessert?   Ice cream

...candy?   Eyeball (apparently she just had one yesterday)

...drink?   Lemonade

...restaurant?   Donald's

...animal?   Elephant

...book?   Clifford

...song?   SING (all of the songs)

...game/sport?   Riding my bike

...TV show?   Mickey Mouse Clubhouse

...movie?   Moana

...thing to do outside?   Ride my bike

...place to shop?   Kroger

...shirt/outfit?   A dress

What do you want to eat for your birthday dinner?   Cake

Who is your best friend?   Juni

What do you want to be when you grow up?   Big :)

Hopefully a Final Mama Health Update

I can see the finish line for driving again (Monday!), and I feel a lot more certain now than when I did three months ago (when I was also nearing the finish). I feel like we have a diagnosis and the medicine is working like medicine is supposed to, and I am trying really hard to trust in that and not get anxious about the 'what ifs.' Scientists are paid lots of money to research and develop these things, and it's for good reason.

I definitely feel better having had a seizure in the EMU (Epilepsy Monitoring Unit) that I could see with my own eyes and that my doctor could see and feel confident in what's going on. There are still a lot of whys and hows that I want to know the answers to, but we've run the only tests we can run, and the rest is 'philosophical' as my neurologist has explained to me.

My check-up a few weeks ago with my neurologist went well. He was very reassuring and reminded me that it took torture (by them) to make me have a seizure in the EMU. I have had a few symptoms that have kept me on edge for the last 87 or so days (since switching meds), but it turns out they're just side effects of the medicine. Some memory issues, tingling in my head, loss of words, lightheadedness, etc. I can get used to them, as long as I stay seizure-free. My medicine level is 'great,' so onward and upward we go.

As I reflect on the whole not-driving experience, I am most thankful to Kevin for picking up the slack and driving us everywhere. From dropping off Lewis at camp and picking him up on lunch breaks, to stopping for milk on the way home from work. 

I am also thankful to my in-laws and my parents for driving us around. For taking me to doctor's appointments and/or staying with the kids.

I am thankful to my neighbors and friends who have offered up rides and/or adjusted plans for us. Some have driven to us to hang out, some have come over and taken me on errands, and some have just opened their (car) doors to us. I didn't take advantage as much because I don't like to inconvenience anyone, but I am so glad to have so many kind people in my life. I never did call an Uber, like I thought about, and I never used the city bus that I was going to try to use to get around (car seat stresses). Since quitting my job, we didn't have any regular places to be, so it was unnecessary.

I am thankful for ClickList, which I have now fully embraced for my weekly grocery shopping. In the spring, I was walking to Kroger, shopping, and getting a ride home from Kevin and the kids, but the hotter summer months have made me change things up. I've really only done it 3-4 times, but it's been such a lifesaver. It was free at first, but even paying $4.95 makes it worth it. I'm looking forward to grocery shopping by myself again, but I will consider CL if we are having a big party or just get too busy sometime.

So things are looking up! Lewis starts school next Wednesday, and Lenore starts 3 days/week after Labor Day. I'm working on our calendar for the fall, and I'm looking forward to getting on with our more 'normal' life again. Hooray!

Just an Update, a Month Later

I've been on my new medicine for a month now and feeling ok. I'm taking Vimpat now instead of Keppra because Keppra messed with my head, majorly, and I still had episodes while taking it. Vimpat is newer and doesn't yet have a generic, so I'm probably going to face issues with insurance in a few months once the free trial runs out.

I still have some light-headedness and tingles (I can't think of the appropriate word right now) that dance across my head sometimes. It feels like someone is tapping swirls around my brain, really quickly. I do feel like my memory is not quite 100% (though it never really was, but it feels a little slower/worse than before).

I ended up having to go back in and have a blood patch on my back, which was the worst pain I've ever felt in my life, after the spinal headache was still there 6 days later. They said the spinal tap pokes a (large) needle through your spine and out the other side. If one or both holes don't close up, you leak spinal fluid. Since your brain floats around in that fluid, if you have a leak, your brain has less cushioning (because there's less fluid for it to float in), and you will have the terrible headache until the hole is closed up. The blood patch is a procedure which just goes in the spine (and not out the other side), and you have your own blood injected so that it will coagulate and close up the hole(s) for you. The blood has to be fresh, though, so it's a very primordial procedure, to me.

First, I was numbed with Lidocaine (which hurt really bad--multiple stinging shots, over and over). Then the doctor immediately (before really giving the Lidocaine a good chance to work, I thought) went in for the procedure. He inserted the huge needle in my spine, then the nurse withdrew a pretty big vial of blood from my arm (which hurt like a mother), then the doctor injected that blood into the needle in my spine. The whole thing took just a few minutes, then I had to lay flat for two hours. I was released to go home and immediately felt much better.

I ran into my neurologist in the waiting room beforehand, and he was very confused and asked what I was doing there. I told him about the headache, and he was so apologetic. :) Obviously not his fault, but I told him it was all his fault. I was just glad to get some relief.

I go back to see him in July, and my return to driving is still slated for the middle of August. Fingers crossed that nothing happens to extend that. Poor Kevin had to drive all the way to/from Hilton Head, and now we are trying to figure out how to get both cars in for oil changes. Uber, much?

Neurology Update from May 12-17

I checked back into the Epilepsy Monitoring Unit on Friday, May 12. I was told to sleep deprive myself the night before and not take my Keppra that morning, both to kind of jump start my stay. 

Friday night, I was sleep deprived again (up until 1), then I did strobe lights and hyperventilating (until about 1:30) before going to sleep until about 6:30am. 

Saturday was a long, frustrating day of nothingness. Saturday night, they gave me a medicine to make me sleep and to lower my seizure threshold, but nothing happened.

Sunday was another long day, with sleep deprivation again that night (up until 2am).

Monday night, they gave me a higher dose of the medicine to make me sleep and to lower my seizure threshold and DING DING DING!!! I finally had a seizure!!! I have no recollection of it happening, but the nurse and EEG tech told me about it about 3 hours later. I couldn't believe it--FINALLY.

Tuesday morning when my doctor arrived, I gave him a big high five. He's been just as determined and frustrated by all of this as I have. He confirmed that it was an electrical/epileptic seizure. He told me that they don't know the cause of epilepsy in 80% of cases, but that he could look into an autoimmune connection (since I have IBD and psoriasis) and/or do another MRI to make sure my brain looks good. Beyond that, he really doesn't have other tests to perform (mind boggling to me).

Tuesday day, I had a spinal tap (aka lumbar puncture) done to test for an autoimmune connection. When I got back to my room, I had to have IV fluids to try to curb any side effects from that test. Tuesday night, they gave me Valium to really knock me out, and I slept off and on that night. I had a splitting headache when I sat up Tuesday evening, so the nurse suspected a lumbar puncture headache. She talked to my doctor, and he ordered more fluids, an IV anti-inflammatory medicine, and flat bedrest that night. So from 1-2am, I couldn't sleep because of the IV pump. Besides that, I slept fairly well and my headache was gone on Wednesday morning.

Wednesday morning, I had to go down and get an MRI and wait for those results before being discharged. Along with seeing the MRI results, my doctor let me see the video and EEG of my seizure, which was fascinating to me. It might give me nightmares, but I am really glad I got to see what I look like. As far as the MRI, all looked the same two years ago when all of these issues started. I was released around 11am and headed home to finally take a shower and move around freely without having to have assistance. Hooray.

Then the headache returned, and I felt clammy and nauseous all afternoon/evening. I did make it out to see Beautiful: The Carole King Musical with my mom, but I have a headache again today and need to take a nap right now (b/c Lenore is napping).

I will have to follow-up more often with the neurologist for the next year to make sure the medicine is keeping things under control. He switched me off the Keppra because a) I still had seizures while taking it and b) it was (scarily) messing with my memory and making me feel very foggy.

Fingers crossed that the new medicine will keep things under control. If all goes well, I will be able to drive again August 14, right in time for school to start back for Lewis.

Looking back over the past two years, I think I have had 7 seizures (that we thought were parasomnias or syncopes or other things): 3 in the 6 month period of 2015 when I was still up nursing Lenore in the night, 1 on February 4, 2 on May 3, and 1 on early May 16.

I'm glad to know that they are true epileptic seizures, but I can't believe they (scientists/researchers) don't know the cause in so many cases. There are things that can trigger seizures and lower seizure thresholds, so I guess I can do my best to follow the guidelines. But it's pretty harrowing to think that there's so much unknown.

To be continued...

Neurology Update from May 8

I was greeted by my neurologist on Monday with a loud 'What is WRONG with you?!' I appreciate his humor in all of this, I really do. He said he kept me in the EMU last month to be certain of his diagnosis, and he felt sure of it. My EEG was 'pristine,' according to him. He said that he likes to be right, and that he is usually right. He felt like it was looking like neurocardiogenic syncope (fainting) instead of epilepsy. He had referred me to the cardiologist, who I saw last week--he told me to stay hydrated and sent me on my way.

My neurologist was really, really surprised to hear that I had more episodes. He said that standing up in the bathroom is probably the most common way he has heard of people having syncope episodes, so he would have passed that off as a blood pressure/blood flow issue. But then, the fact that I had another one in the ER, a few hours later, just sitting in a hospital bed, is what is driving him the most crazy.

Through the neurology appointment on Monday, I mentioned (again) that I do have IBD (ulcerative colitis) and psoriasis, and he asked how long I've had those symptoms. Psoriasis was at its worst right before Lewis was born because I remember having laser treatment on my feet (and being super pregnant). The IBD started right after Lewis was born and was worsening and worsening until just last fall when I started a new medicine (Entyvio). That medicine has been checked out and is not found to cause seizures, but I think my doctor is thinking that there could an an autoimmune connection to my seizure issues.

I am heading back to the EMU on Friday. I'm supposed to sleep deprive myself beforehand and skip my morning dose of medicine to get things moving along. I'm not sure if he's planning to try to trigger a seizure or not--he said he has all of the data from before to work with, so he has more specific objectives in mind. I could stay one night or a longer stay--he couldn't say.

He is going to do:

• another MRI (it's been 2 years since my last)
• a spinal tap (to test for an autoimmune connection)
• possibly a tilt test (to check my blood pressure situation)

And I have to take blood thinners since I developed the blood clots last time. I feel like it will be easier in some ways because I know what to expect, but harder in some ways for the same reasons. Being attached to all those wires is the worst part, but hopefully he can figure some things out and get me going on the right path. As of now, August 1 is my date for driving. If I do have a seizure in the hospital, we start counting all over again (90 days).

I'm feeling lightheaded and having trouble remembering things, which could be from the increase in medicine. Or just my brain calming down and recovering. 

Lenore at 2 1/2 Years

I think that they (doctors/insurance companies) must have added a well-child check at 2 1/2 years since Lewis came through that age. I feel like we went at 2 and at 3 with him, but 2 1/2 feels a bit odd. Anyway, Lenore went on Monday, and everything checked out well.

Her stats:
Height: 37.5 inches [91st percentile]
Weight: 33 pounds 3.2 ounces [89th percentile]
Head Size: 51 centimeters [98th percentile]

I feel like she's caught up/surpassed her normal growth curve. I think she was more 'average' before and now she's a little more 'above average.' She didn't have to have any shots or finger pricks, so it was a pretty basic appointment. I DID finally switch offices (still within the same hospital system, but to one more conveniently located to us and hopefully more efficiently run). The doctor was very friendly and took a lot of time with us (AND WAS ON TIME, which is a huge improvement).

What she's doing:

• Still napping. #praisejesushallelujah When she doesn't, there's hell to pay for days and days after. She typically sleeps 3 hours in the afternoon, and close to 12 hours at night. She is still in her crib, but I have started thinking about when we will transition her to a twin bed. Maybe once school is out, we will put a bed in her room and let her live with it--I feel like it's going to be a lot easier with her (vs. Lewis), but I feel like it needs to be her idea.
• If you'll recall, we had no choice with Lewis because he was climbing out of his crib at 18 months and was a danger to himself. We were forced to find a way to keep him in his bed (and naps suffered and it was a very dark period of time). I think Lenore's personality is such that she will decide to when she decides to and she won't look back.
• On a related note, potty training is going to go similarly. She decides/announces that she needs to pee occasionally, and she will go and clap and wipe and flush and all is well. It's not happening consistently for her, though, and she doesn't seem to be in any hurry.
• She has so much attitude. We joke that she's a strong, independent woman, which she is, but MAN. When she has put her mind to something being a certain way, there can be times when nothing we can do or say will sway her from getting it her way. It can be so challenging.
• She has been out of preschool since March 17 (when I quit working and pulled her). She is all set to start at a new school near our house this fall, 3 mornings a week. I'm really excited for her/us to have a fresh start, with 3 years of preschool still ahead of her, because of the way her birthday falls (October 29).
• She had tubes put in last month (finally), and we go back to have them checked tomorrow. I'm sure everything will be fine with that--she seems unphased.
• She says really funny things these days. She says 'about everybody else' in the improper context, so it cracks me up now that I recognize her doing it. 
• Example: She took a magnet off the fridge at lunch today and said, 'What is this about everybody else?'
• I think she just meant, 'What is this?'
• It was a superhero-shaped bottle opener magnet, so I think she was trying to ask who he was/what character/etc. If you spend time with her, listen for her to insert 'about everybody else' from time to time.
• She loves to walk on her own, ride her bike on her own, look for rocks on her own, etc. She really no longer allows me to take stroller walks with her. Or we will walk to a destination (i.e. the lake to look at geese), and then screams THE ENTIRE WAY HOME about how she wants to walk. I can put her in the bike trailer to get where I need to go, but, even then, she sometimes screams when I try to get her back in to go home. It really sucks not being able to drive places. It sucks having to rely on walking or riding my bike everywhere...with a screaming toddler. Any chance I can get to have some peace and quiet, I need to take it. I do get up to walk with a neighbor two mornings a week, and that is nice. But as far as being productive and getting errands run, that quiet/alone time is something I have missed and will miss until August (or beyond) rolls around.

Sorry to stray. I'll post a health update, as well. I met with my neurologist on Monday, as well, and he seems to have some theories.

Well, This Week Sucks

Monday of this week, I finally met with the cardiologist, referred by my neurologist. He looked at my test results from my time in the EMU (the Holter monitor and Echo), and he said that everything looks great/normal/not alarming. His theory was that I was up and down, running around (which I was, for 36 hours leading up to February 4th), dehydrated, and that I passed out. Simple as that, he didn't see anything wrong with me and sent me on my way. Cleared by him and the neurologist a few weeks earlier, I decided to go ahead and let myself drive a few days before I'd planned. I drove home from the cardiologist, then to run errands at like 7 different places (sweet freedom). After getting Lewis from the bus stop, I went over to pick-up Lenore from the in-laws and back home. Tuesday, I drove to the zoo (with a neighbor) to chaperone the Kindergarten class trip. Tuesday night, we had dinner with the neighbors, and I very clearly remember basking in my new freedom, once again. Summer time. Freedom. Fun.

Then Wednesday happened.

I woke up at my normal time, went downstairs, made coffee, and sat with Lewis and talked of our plan for the evening (he wanted to go down to see the Belle of Louisville race in the Great Steamboat Race, part of the Kentucky Derby Festival activities this week). I had my two cups of coffee while waiting for Kevin to get ready for the day, then he and I switched places. As I sat down to use the restroom, I realized there was no toilet paper, so I yelled at Kevin to bring me some. The next thing I remember, I was on the floor, with Kevin telling me I had another episode. I seem to have stood up and went head first into the tub (based on the bruises on my ear and side of my head). Kevin moved me to the ground, put me on my side, and put a pillow under my head.

He called my doctor, I believe, and they said to bring me on in. While I was in the ER, I had another episode in front of the nurses and nurse practitioner. I don't remember any of it, just feeling verrrrrry tired afterwards. They've kept me on the same medicine for now, just a higher dose (750mg 2x/day instead of 500mg). I have pretty spotty memories from Wednesday--who I talked to, what was said, etc.

I already had a follow-up appointment on the calendar with my neurologist on Monday, so I'm really anxious to hear what he has to say. His supposed 'gold standard' of testing showed nothing, so I'm wondering what other tests are out there. There is a tilt test that the cardiologist mentioned (as did the neurologist when he was hypothesizing that it could be heart-related), which involves tilting me different ways to see what happens to my blood pressure.

All I know is, I can't drive until August 1, which feels like the entire summer. Just when I was getting my freedom back (day 88 of 90). It's hard not to be bummed about it, but I guess we'll do what we do and make the most of it. We will continue to walk and ride our bikes and go for hikes in the woods. Lewis's school is just over a mile from our house, so we'll probably be there a lot this summer. It's just such a bummer. :(

My (almost) Week in the EMU and What Came of It

I still did not know whether I was going in for my EMU (Epilepsy Monitoring Unit) admission as of March 27. I was told by my doctor (on February 28) that I would be checking in March 31, but no one I could reach on the phone knew anything about it. They all told me the next opening was in July. Someone was supposed to call me weeks before to confirm, but no one ever did, so I assumed I'd been lost in the system and lost my place in the (very long waiting) line.

On Monday, March 27, they called to confirm that I was, indeed, checking in on Friday, March 31, and I was shocked. My sister had bought a ticket for that weekend a few weeks prior, with a 50/50 chance that we'd be spending her stay at the hospital vs. at our house doing fun house projects (or a combination of both).

Friday, March 31 - I checked in around 2pm with my sister. I saw my doctor right away as they were hooking me up to the EEG monitoring wires (with what smelled like rubber cement, in my hair). He told me they would be doing strobe lights and hyperventilating that night once I got sleepy, but otherwise, I had the night 'off' to settle in and start more involved testing the next day. 

The goal of my stay was to trigger a seizure and/or irregular brain activity that could show where/why I had my episode on February 4. He said that even if I didn't have a full-on event, he would be able to see ripples that would give him more information than what can be captured in a traditional 1-hour EEG.

I was hooked up to the electrodes on my head as well as heart monitors on my chest and stomach, and I had a very long power cord that I was attached to. I had a small fanny pack with my monitors (EEG and heart) in it, and I had to carry it to/from the bathroom whenever I needed to go. AND I had a bed alarm, since I was a fall risk and potentially epileptic, so every time I needed to pee, I had to call a nurse to turn off the alarm, help me out of bed, and be in the room while I went to the bathroom. Every time for 6 days.

Saturday, April 1 - I woke up from a HORRIBLE night of uncomfortable, interrupted sleep. I forgot about the whole checking-your-blood-pressure-and-temperature every 3-4 hours thing, and it was awful. I had all of the EEG wires glued to my head, so I was afraid to sleep on my side, and unable to really get comfortable on my back (I'm a stomach sleeper, typically). They had to come in and reglue a few of the wires in the night, as well, and it was just rough. I woke up for the day at 5:30am, thinking I could take a nap later, but I was told that we would be doing sleep deprivation that night and that NO NAPS were allowed that day. I was to stay up until 2 or 3am. Phew! That was a long day. I think I had coffee every 4 hours until about 10pm. Kate came to visit that morning and stayed until the afternoon.

My sister came over in the afternoon and stayed up with me the rest of the day, watching both games of the Final Four and starting Unbreakable Kimmy Schmidt, until about 1:30am. What a trooper--she did have the Boise time change working in her favor, but still. I was so impressed she lasted that late--I would not have made it without her. She headed home, and I was tested with strobe lights and hyperventilating again from 2:15-2:30am. I had a pretty good chunk of 4-5 hours of uninterrupted sleep that night.

Sunday, April 2 - I woke up feeling more refreshed than the morning before. I was told we'd be trying a medicine to relax me (and, thereby lower my seizure threshold) that day. It was called Seroquel, and it hit me very hard as I was trying to visit with my sister and my friend, Stacey. Around 10:30am, my eyes got very heavy, and I napped until lunch, ate, then napped a few more hours. They gave me another one in the evening, and it knocked me out, as well.

I think this is the day my doctor told me I would be staying until Wednesday. It was either Sunday or Monday.

(Up until this point, I really thought I'd be going home on Sunday or Monday. I thought I'd be a quick case and that I'd get to spend the last few days of my sister's visit at home with her, doing fun things.)

Monday, April 3 - On this morning, my doctor came in with a paper prescription sheet, and he wrote out directions for me to drink a maximum of 2 glasses of wine that evening. He also offered to walk next door to Costco to get some, but I insisted that my sister could bring some from my house. She did, packing it on ice in Lewis's cooler bag, and she and I partook in some wine while watching the NCAA championship game between North Carolina and Gonzaga. 

My doctor wanted to order a 24-hour Holter monitor test to check my heart (just to check all of the beats of my heart for 24 hours), so a cardiology tech came down to add that to my repertoire of wires. They kept it on until Tuesday, and it was reported to me on Wednesday that everything was normal.

Otherwise, Monday was a pretty uneventful day. More Kimmy Schmidt and magazines and coloring books and logic puzzles and Sudoku.

Tuesday, April 4 - On this morning, my doctor asked how I was doing (as in, mentally). I told him I was ok (aka that I wasn't dying to go home, that I was ok with staying), so he said he would like to keep me until Friday (which was the maximum allowed). Still nothing had shown up on my EEG, and he wanted to run a few more tests to make sure that we weren't missing anything. He said that I could leave on Wednesday, but that would leave unanswered questions that would require me coming back in and starting anew in 6 months. If I was ok staying, he wanted to just push through and see if we could get anything to show up. His determination to get to the bottom of it made me determined to get to the bottom of it, so I made arrangements to stay until Friday (my mom extended her stay, while my dad decided to head back home). I think my doctors words were that he needed to look for the zebra instead of the horse.

My sister left midday to fly back to Boise--it was so great to have her there with me.

I also had leg pain that morning under my fashionable and functional compression stockings. My doctor ordered an ultrasound, and the tech found that I had two superficial blood clots on my right leg (one on my inner knee, one on my calf where my varicose vein sticks out). Due to that, I had to take a dose of blood thinner on Tuesday afternoon and again on Wednesday.

I had back to back visitors that evening--my parents with Lewis and Lenore, then Kate, then Kevin, then my friend Stacey. She arrived at 10 and stayed with me until 2:30am!!! She brought me fresh magazines and Scrabble, so we spent the night talking and playing Scrabble and being delirious together. Then she got to witness another round of strobe light and hyperventilating tests from around 2-2:15am. They let me sleep from 2:30ish until 7:40 the next morning, so a solid 5 hours (with no blood pressure or temperature checks) that night!

Wednesday, April 5 - On this morning, my nurse gave me my seizure medicine first thing in the morning, which was strange. I'd stopped it upon my admission, so I got really nervous and wondered if they'd found something the night before. Instead, they'd found nothing (again), and my doctor decided he was sending me home the next day. He said that my brain waves were beautiful and that he felt sure that it had to be something other than abnormal electrical brain activity that caused me to fall and go blue and shake. He mentioned neurocardiogenic syncope (which is a type of fainting associated with low blood pressure, not enough blood getting from the head to the heart i.e. if the blood rushes to your head, etc.). He'd mentioned that term a few days before, as well, when Emily was still there because I remember that she and I googled it. Vasovagal syncope was another possibility he mentioned.

The Holter monitor results were normal, but my doctor ordered an echo to look closely at my heart and make sure all was well within there. The echo had just started when my friend Kate's mom, Lynne, arrived to visit, so she got to watch the whole thing. They did the echo first, then injected me with 3-4 rounds of 'agitated saline' (saline that was stirred/shaken/etc. to make it bubbly) and one round of a dye. I heard them using terms that sounded familiar from Lenore's cardiology appointments, so that made things a little less scary. The echo report came back the next day, and all looked good.

Thursday, April 6 - I woke up to my doctor asking what time my mom was coming to pick me up. (Yay!) I called to get her and the kids heading that way, and I was unhooked from the wires, officially discharged, and on my way home within an hour. My doctor told me I either set the record or tied the record for the longest stay in the EMU (6 nights). He made me tear up as he complimented my 'constitution' and told me that I was a trooper throughout my stay. He said that I have very beautiful and very boring brain waves, which is a good thing. He said that I should take comfort in knowing that, whatever happened, it wasn't due to epileptic activity. We still don't know what it was, but he is ruling out epilepsy.

I am being referred to a cardiologist to see if they can determine what the cause might be, and I am following up with my neurologist after the cardiologist, as well. I'm supposed to keep taking my seizure medicine (just because we don't know what it is yet) and I'm still not supposed to drive until my 90 days is up (May 5).

Wrap Up
Throughout my stay, my sister was with me as much as she possibly could be. It was such a treat to have her here. She helped at the house with the kids some and went for runs, but otherwise she was by my side. Most everyone that entered the room asked if we were twins, and everyone asked about her once she flew out Tuesday. We will get to see her and my brother-in-law, niece, and nephew in June when they come to visit for a few weeks. 

I am SO thankful for Kevin and for my parents for hanging out with the kids, bringing them to visit, and for keeping them fed and happy while I was away. I know that they are a handful, and I'm so thankful that I was able to leave them and not worry. Lewis was on spring break, so my parents were able to take him and Lenore to the science center one day and the zoo another day.

I'm thankful for my friends who texted and called to see how I was doing. For my friend who dropped off candy and coloring supplies the day I was heading in. Every little thing helped pass the time.

I'm thankful for coffee. Never has it ever tasted so good. I did get a little more comfortable each night with my sleep positioning, so I was able to sleep better as the time went on, but I'm really tired and feeling like I still need to catch up on sleep. It feels amazing to be back home in my own bed.

I'm thankful for the never-ending power of baby wipes. My sister had suggested I bring some, and I'm so glad I did. I turned down the offer of a bath from the nurse/nurse aide, and I opted to give myself a baby wipe bath every couple of days. My hair was a hot mess and started to smell after day 3 or 4, but there was nothing I could do about that. The electrodes had to stay glued on the whole time, so a shower was out of the question. I didn't have to wear a hospital gown, which made things more comfortable. I wore my own comfy pants and shirts with a wide scoop neck, and I had Kevin wash them and bring them back as needed.


I think I still have four episodes of Unbreakable Kimmy Schmidt to watch, and then I will be all caught up. :)

More Updates on Mama's Health, Job, and Not Driving

I didn't realize it's been a month since I last wrote, but I guess I will write again.

I saw the neurologist on February 28, but he had no answers for me. He said since I have no family history of epilepsy, it's confusing to him. I seem to be too old and too young to have newly-occurring seizures, so they are scheduling me for a longer study. The sleep-deprived EEG I did last month came back normal and my CT was normal, so they don't seem overly concerned.

It took almost a month to get in with the epilepsy specialist, and now it will be another month or more (from that appointment) until they get me in for the next test. I will check into the hospital and stay for 2-3 nights with constant monitoring to see if they can figure out why/how/where I had the seizure. They will try to trigger something through sleep deprivation, stress, being off the seizure medicine, etc. I was warned three times by the doctor that it will be boring, but I really don't think he knows what it's like to be a parent of two children. Boring sounds like a vacation to me. Bring it on, I say.

In the meantime, I'm supposed to work on getting enough sleep, lowering stress, limiting alcohol/caffeine, and eating more protein in smaller meals throughout the day (to help keep my energy/mood up so I can better deal with the stress). Again, the children. :)

Life without being able to drive is going ok, I suppose. I think we are at the halfway point now, or near to it. I've ordered a bike with a trailer (for Lenore) to help get the kids and I places a little more quickly, which should help. Lewis is doing track, which is pretty low-stress, but we have practice to get to at 5:30 two nights a week. I get him from the bus around 4:10 (plus a 5-10 minute walk home from the bus stop and a 30 minute walk to school), so that doesn't leave us much time for dinner and homework in between or after. (Sometimes Kevin gets there during practice to take us home.)

I have had very generous friends/neighbors give me rides to Costco, Kroger, etc. I have started a weekend routine of walking to Kroger (about 1.5 miles away), shopping on my own, then texting Kevin when I'm checking out so he can come pick me up (with a cart full of groceries). It has worked out well, so far, especially in giving me the feeling of independence. I hate to feel like I'm inconveniencing anyone or that anyone is waiting for me. I also had a visit from Adie during her spring break--we went to the zoo and she picked me up from school one day. My mom has come down to stay a few times to help shuttle us around and give Kevin a break.

I also decided to resign from my job last week. We had to move locations mid-year because of issues from the church we were inhabiting, and Kevin was driving Lenore and I to school in the morning and picking us up during his lunch break. Our neighbors were getting Lewis to the bus stop the 3 mornings a week when Kevin was taking us to school/work. Anyway, the job. I'd been voicing my concerns at the new location, and eventually it got to the point where the stress of staying was outweighing any benefit of staying. I pulled Lenore out, as well, because I felt a little betrayed/wary by the judgement of the people making the decisions after some discussions I had.

She is registered at a new preschool (as of a few weeks ago), just up the street from our house, so I'm looking forward to a fresh start for her. She still has 3 years of preschool since she has an October birthday, so I'm looking forward to getting to know a new place. I think she will go 3 days, with one being a normal 3-hour day and two being longer 6-hour days. I might try to find an administrative assistant job on those two longer days if I can find something that works just right. Or I could send her 3 days at only 3 hours and use the time to clean/exercise/shop/etc. We'll see how the next 6 months unfold, I guess.

I did get approved to ride a special bus the other day--it's through the city's bus system, but it's a door-to-door service for $3 a ride (Lenore is free). The nearest bus stop is 1.5 miles from our house, which could be doable, but I have to lug Lenore, her stroller, a car seat, backpack, etc. with us on that journey and then have a place to put it on the bus. The special bus comes right to our house and takes us to a pre-arranged location (I have to call to set it up the day before). I'd still have to bring a car seat along for Lenore (and then take it out at our destination, I guess?), so I'm not sure if it would be worth it or not. I've considered joining the Y so we'd have a place to go a few days a week now that we're home 5 days/week, but I'm not sure if the money (and hassle of riding the bus) is worth it or not. Walking the neighborhood has been working out well enough for now. We'll see.

My longer test was supposed to be next weekend (March 31-April 2 or 3), but they're 'reworking the schedule' and are supposed to call this week to let me know my testing dates. I kind of doubt I'll get in next weekend since it's just a week away, but I guess it could happen.

My SISTER is coming to visit next weekend over the end of her spring break and beginning of ours. She will either be hanging at the hospital with me (if I have my test) or helping me around the house. I'm so excited to see her--it's been since last June that I saw her (my Christmas trip to Boise with the kids fell through). I know she will be a big help in tackling some house projects that need tackling.

Health Updates for Mama

I had a seizure in my driveway on Saturday, February 4, in the middle of the afternoon, out of the blue. Thankfully, my friend Adie had just gotten here from Bloomington, and she would be the #1 best person in the world to be here. It was scary, but I'm ok. I had a bump on my head, but the CT came back clear. They started me on seizure medicine that day.

I saw a neurologist later that week, and he said it appears to be epilepsy. He ordered a sleep-deprived EEG (which came back normal), and I have an appointment next week with a different neurologist who is an epilepsy specialist.

I had some issues about a year and a half ago while I was still waking in the night to feed Lenore. Three episodes over six months--I'd shake in my sleep, wet the bed, but I didn't know until the next day when Kevin would tell me. The third one was the worst--I shook out of bed and woke up to Kevin yelling at me (about being on the floor). After that one, it took me a while to 'come to,' and I had some weakness in my legs for a few days. And I finally called my doctor.

I saw the neurologist I'm going to see next week after that, and he ordered an EEG, MRI, and sleep study (all normal). I was told to get more sleep and that was that.

Leading up to this latest episode, I had quite a lot going on. I woke up early (5:45am) the day before to walk, worked at the preschool, babysat for some neighbors, and went grocery shopping at 11pm. I then woke up Saturday to make food for a friend's MIL's visitation, delivered that food, went to Lewis's basketball game, lunch, and then got ready to go to the visitation. Once Adie got here, Kevin and I walked outside to help her get her boys inside, and that was when it happened.

The positives are that I'm walking more. It used to be 'Should we go for a walk or go to Target? Let's go to Target.' Or Kroger, Goodwill, etc.

That's perhaps the only positive. :) I can't drive for 90 days, which is May 5th-ish. Oaks Day (the day before Derby Day), if you live in Louisville.

Lenore and I have been riding to/from work with Kevin last week, and my mom was here to help the week before. My work situation has changed over the past few weeks (we moved out of one building and into another), and I'm not doing well with the transition. It was sudden and emotional and very stressful for everyone, and now I'm making plans for Lenore to go elsewhere next fall. If stress is determined to be what caused all of this, I might leave my job and pull Lenore out of school (to eliminate the back and forth of Wednesday-Friday).

I finally used ClickList last week, too. It's the service at Kroger that lets you make your shopping list online, and they have it ready for you to pick-up at the time you choose. Kevin was able to pick it up on the way home from work--I just placed a small order the first time to get us through the week and to try it out. A couple of friends had been raving about it, but I hadn't had a good reason to use it yet. Now, we do. My friend Kate came over this weekend and took me to Costco and Kroger for full shopping trips, which I so appreciate. I stocked up for dinners for a few weeks. :)

For now, I'm trying to stay busy at home with house projects I've neglected (because, Target). I had a really productive day on Sunday in the yard while Kevin took the kids to the zoo, and I'm ready to plant, but Home Depot apparently doesn't have plants in stock yet. Come on, spring!

I should know more after my appointment next Tuesday.

Lewis at SIX!

Lewis is SIX!

It's so hard to believe that our once tiny baby boy is now riding a bike, drawing, spelling, reading, writing, etc. He has grown up so much since starting Kindergarten. It really is incredible.

His stats:
Height: 49 inches [96th percentile]
Weight: 58.64 pounds [94th percentile]

What he's up to:

• He loves riding his bike. He'd ridden a few times without training wheels last summer, but then he got a bit of a mental block, both from crashing and from not being able to go as fast. We reattached the training wheels and let some time pass. With the crazy warm winter we've been having, we decided to give it a go again a few weeks ago. Sure enough, he was ready, and he hasn't looked back, since. For his birthday present from us, we got him a bigger bike--still basic with pedal brakes and no gears or anything fancy. His first bike was just too tiny for him now (think knees in the handlebars), so it was time. He's JUST a bit too short to get started on his own with his new bike, so he's still going back to his old bike when he wants to ride independently. If we help him get started, though, he will take off on the new one.
• We have new neighbors! It is great. One of the girls is in Lewis's class, and her older sister is in 3rd grade. They are the sweetest, and it's been so nice to get to know them and shuffle kids to and from each other's houses.
• School is going really well. The work that Lewis does astounds me--the concepts they are learning at such an early age. And he gets it. His teacher and assistant teacher are absolutely wonderful, and Lewis adores them. 
• He is still very much into trains. Over winter break, we had train tracks set up all over the house. Legos are big, too, as well as drawing and writing and drawing and writing some more. He pretty much wakes up and goes straight to the table to draw. He still watches the Kindle some (Lego videos, educational videos that he sometimes watches at school i.e. counting to 100), but he spends more time than anything else, putting pencil to paper.
• He is about 2/3 through his first YMCA basketball season right now. He says he enjoys playing, which is what matters. :) He's still working on learning the basics, of course. I'm not sure yet which sports he will sign-up for again. He played soccer and baseball through the Y last year. He says he wants to do golf, so we might look into getting him into a golf camp this summer. I'm pretty sure he thinks golf = putt-putt, though, so he might be disappointed. Although, maybe somewhere has a putt-putt league?? He also wants to go out for his school's track team this spring, which we are still on the fence about.
• Lost Tooth Count: still 2! The bottom middle ones. His dentist said the top middle would be next, but they aren't wiggly yet.

Lewis's Favorite Things (Age 6)

What is your favorite...

...color? Blue

...toy? My Polar Express

...stuffed animal? My doggy

...thing to sleep with? My big teddy bear (that used to be his auntie Schwee's)

...fruit? Blueberries 

...vegetable? Carrots 

...cereal? Cheerios

...thing to eat for breakfast? Toast

...thing to eat for lunch? PB&J

...dessert? Ice cream 

...candy? Hershey's Kiss. Actually, Crunch bar. (I included all of his words because I love when he uses the word 'actually' in a sentence.)  :)

...drink? Lemonade 

...restaurant? McAlister's

...animal? Tiger

...book? I Spy

...song? Trolls (aka Can't Stop the Feeling by Justin Timberlake)

...game/sport? Basketball 

...TV show? Mickey Mouse 

...movie? The Polar Express 

...thing to do outside? Play tag

...place to shop? Kroger 

...shirt/outfit? My choo-choo train shirt

What do you want to eat for your birthday dinner? PB&J 

Who is your best friend? Eli

What do you want to be when you grow up? Train driver 


Here is a link to his favorite things at 5, and at the bottom of that post, there's a link to age 4 and age 3, if anyone is interested.

I'll take his picture this afternoon--he wasn't up for it this morning before school.

What I'm Digging

As an ode to Young House Love Has a Podcast, I'm writing a What I'm Digging post. Randomness abounds, but we've had a lot of happenings around here lately. This was started about a month ago, so things have actually changed since then, which I will explain in a new post.


Facebook of Today Sucks
I wish I could hide all political/religious/etc. posts and just get back to babies and puppies.

I can still remember years ago when there were other heated discussions going around, and I lost friends over it. I remember thinking, 'How can someone so openly express their feelings for all to see?' Didn't their parents teach them that some things were best kept to themselves? Along with, 'God, I don't even know that person/morally oppose that person/etc.'

I want to say, 'Just. Shut. Up.' to everyone.


So Much Pee
aka Lenore is Potty Training
aka Peter is in Early Liver Failure
aka Lewis was Sick
That was short-lived. Lenore decided to potty train one day, which I knew she would. We started on a Monday, and I sent her to school Wednesday and Thursday of that week in underwear. Wednesday, she held it until the end of her three hours until she had an accident. Thursday, she went through three pairs of underwear/pants due to accidents. By Friday, I decided we were back to diapers. Once this case runs out, I am changing to Pull-ups because they are easier to get on/off given our current situation. She will go pee by herself when she needs to, but she still doesn't poop in the toilet. She is wearing a diaper for now and pretty much keeping it dry all day (except nap and overnight and except for poop).

Peter is still in liver failure, but it's not as serious as I thought it was. I thought he was going to have to be put down the week we found out, but steroids have improved things (while also making him pee all over the house for a few weeks there). He's tapering off the steroids now, and I think he knows that we will let him out 2x as often as our normal, so his accidents have stopped (thank God). We go back in two more weeks to recheck his values and see if we can taper the steroids further. He's always had liver issues, but this was different. He wasn't eating much for about a month, so we've switched his food to a lower protein one (to make things easier for his liver to digest) and the steroids have helped him perk up. He's also on an antioxidant to help rejuvenate the part of the liver that was failing, and he's on two medicines to protect his stomach from ulcers (caused by the steroids). So, four medicines for the old boy. I'm lucky to remember to give them half the time, but he still seems to be fine.

Lewis was sick a few weeks ago and took a nap on Kevin on the couch (unheard of for the past 2+ years). As he napped, Lewis PEED ON KEVIN AND THE COUCH. (I first thought he said he'd just sat in it, but Kevin corrected the details for me.) 

So Kevin was covered in pee, and the couch smelled for a few days while it was being cleaned and drying out. I threw my jacket in the laundry that same night of Lewis/Kevin's couch/pee incident, only to quickly retrieve it to go out for a drink with a friend. As I got to the destination, I realized I was covered in pee from my jacket laying on top of  a kitchen rug that Peter had just peed on.

Pee. Every. Where.


Working
I enjoy working. I don't know that I necessarily can handle being with little ones all morning and then coming home to my little ones for the afternoon/evening, but I do appreciate the freeing up that working has provided me. Before, it felt like everything fell on me because I was the one who was home and that was my job (which it certainly was). Now that I work three mornings a week, things are being divided and that unspoken burden has really been relieved. I'm so lucky to have Kevin to share in this crazy adventure of parenting. To be continued...