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. :(
Friday, May 5, 2017
Saturday, April 8, 2017
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. :)
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. :)
Wednesday, March 22, 2017
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.
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.
Tuesday, February 21, 2017
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.
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.
Wednesday, February 15, 2017
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.
...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.
Tuesday, February 14, 2017
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...
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...
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