Monday, March 02, 2015

Two months later

We had our follow-up appointment this morning with the pediatric neurologist.

The fMRI results are in and... Trudy has a brain!

Okay, very funny. The REAL results? Trudy's brain is completely normal. (This is why I can make jokes, PRAISE THE GOOD LORD.) There was no indication that the seizures have caused any damage, nor (as far as I understand things) was there any evidence of seizures still taking place.

Hurray hurrah! Yippee zippee!

Trudy this morning in the neurologist's office.

So, where are we now?

The pediatric neurologist is fairly confident (as confident as one can be with the still very-much-unknown world of tiny humans' brains) that the seizures were caused by roseola--a common, childhood illness that causes seizures in about 1/3 of infants who get it. It is still unclear why her seizures presented without fever. The neurologist does have some concerns that Trudy may be predisposed to seizures with illness/infection in the future, BUT we can (at least at this point) say that Trudy does not have a seizure disorder. We will wean her off the seizure medication over the course of the next three weeks. We still must remain on-guard in case she has a seizure again in the future, and have been prepped by the neurologist on what to do if this happens. We have a follow-up appointment to see the neurologist again in six months.

Thank you, thank you, thank you to all of you who sent messages and e-mails and cards and gifts to help us through these past few months. What we have here is the best possible outcome and I'm confident that Trudy is going to live a long, happy, healthy, and hopefully seizure-free life. Thank you for reminding us how loved this little monster is by people near and far. We are all so grateful for your support!

Thursday, February 19, 2015

Hellos and Goodbyes


Three events to reflect on today -- one happy, one sad, and one very sad.

First, a happy hello... to the eighteen-month old baby who lives in my house.


Trudy is one-and-a-half years old today. Where has the time gone?


And a quick update for those of you who may have missed it on Facebook. Trudy had her MRI yesterday and did just fine. 

Post-MRI - coming back to reality!

They had to sedate her so that she would remain still for the test. She was out for about an hour. She came-to quite quickly and was soon eating and drinking and trying to move around like her old self. We see the pediatric neurologist in early March for a follow-up and to get the results of the MRI.

Now, the first goodbye. We were sad to see my parents leave after a wonderful few weeks in Miami. Trudy really enjoyed having her Grandma and Papa around.


(Thank you, Mom and Dad, for a wonderful visit.
You took such good care of us! Love you both.)

And, finally, a very sad, more permanent goodbye.

My Grandma Dorothy--my Mom's Mom--passed away last night, peacefully, in her sleep. My Mom was able to make it to Winnipeg, MB to see her before she died. I last saw Grandma in the summer of 2014 before my cousin's wedding. 

I'm so glad she was able to meet Trudy.

Four generations. July, 2014.

Grandma was my last living grandparent. Her husband, my Grandpa, died quite some time ago (I think 5 years or so?) from complications from Parkinson's. She moved out to Winnipeg just a year or so ago after living in Edmonton, AB for many years. She is survived by her four kids (my Mom and her three younger brothers), nine grandchildren, and ten great-grandchildren (... I think I did the math right).

I have many treasured memories of my Grandma. She was one of the warmest, kindest women I've ever met. She had a wonderful ability to make you always feel special and went out of her way to ask you what was going on in your life. She was a wonderful listener and had such a beautiful smile. 

Easter dinner in Lloydminster, AB - circa 1990?

I didn't get to see Grandma a lot in the past few years but always did my best to keep in touch with her by mail and over the phone. I am so grateful to my Mom and so many members of the Rivington clan for taking such good care of her, especially in the last few years.


She was a bright, beautiful soul... someone I always looked forward to spending time with. Grandma, you live on in my heart. I love and miss you. Thank you for the wonderful memories! (Say "hi" to Grandpa from me. xo)

Wednesday, February 11, 2015

FAB-ruary

So far, February has been good to me... as was the end of January, come to think of it! After a rough start, maybe 2015 is going to be a good year after all!

Some updates:

Trudy - Medical Update

I am happy to report that Trudy has been seizure-free for the past month. She has adjusted well to taking her medicine twice daily and rarely puts up a fight at all. Her fMRI is scheduled for February 18th--we were not able to get an earlier appointment as we'd hoped.

We had a follow-up appointment with a pediatric neurologist last week. The clinic where we saw the doctor was in the Ambulatory Care building at the same hospital where Trudy had been admitted a few weeks prior; this was a different doctor than we'd seen in the hospital. We were told that the clinic rotates through pediatric specialties, with a different bunch of doctors visiting each day. Monday was pediatric neurology day, so the waiting room was filled with all sorts of little people. There were a lot of twins--"premies" and "mico-premies" (prematurely born little people)--some wearing little compression helmets. It was an intense place.

The appointment was weird. The first thing the doctor said to us (Bryn was FaceTime-ing in from work) was that it looked like the tests indicated Trudy'd had meningitis or encephalitis. This was the diagnosis the docs at the hospital first dismissed (referencing the results of her spinal tap) as they worked to rule-out what might be causing the seizures. It's amazing (and terrifying), isn't it, how two doctors can interpret the same results in completely different ways. This doctor said that she felt the seizures were connected to the virus Trudy was fighting at the time. Bottom-line, though, is that the fMRI is still needed regardless of the diagnosis. I'll post an update after the fMRI and our follow-up appointment with the neurologist on March 2nd.

Trudy - Hilarious Baby Update

Trudy continues to blossom! She is confidently walking and running now.

And she's off!
Get your motor runnin'...

Trudy's vocabulary is exploding and she's starting to attempt multi-syllable words like "blueberry" and "belly button." She tells us what she wants now, which is hilarious. She is especially forthcoming when she wants to go outside, and whenever anything she encounters is "hot." This is a really fun stage. She's so precious and hilarious!

Family Visitors

We have had some wonderful visitors in the past few weeks. Bryn's Mum came down for a week in late January to help out with the aftermath of Trudy's hospital stay and diagnosis. It was so special and helpful to have her in Miami.

Bryn and his Mum, Mair (aka "Amma"), with Trudy.

My parents are currently visiting and will be here for another week and a half. It's been such a treat to have them around to help out with the day-to-day stuff. We are planning a few adventurous activities this weekend--I'll report on those later.

Grandma and Trudy enjoying the hotel pool.

We have several more visitors set to come down and join us in the next few weeks. All the poor Canadians are escaping the dreadful weather up there! I can't blame them--right now is the most beautiful time of year down here in Miami (she types from her backyard patio in near-perfect 70-degree weather... not a cloud in the sky... no humidity.)

School, Work, Life

Last weekend I was up in Tampa, FL at the Suncoast Music Education Symposium. I gave two papers--one solo paper (dissertation stuff) and one with my research supervisor. 

Flying solo.
Presenting with Betty Anne.

It was a wonderful conference and I was lucky to have my parents there as full-time Trudy-minders while I was off pretending to be smart! Both papers went really well, and the conference was an amazing opportunity to catch-up with a lot of my favorite folks from (and soon to be affiliated with) UWO.

Family reunion!

Dissertation-wise, much has happened.

My dissertation defense is tentatively scheduled.

THIS IS HAPPENING.

Preliminary submission will happen in early March.

Then, I will defend. 

Then, I will pass. (GOD HELP ME.)

THEN, I WILL BE DONE.

I will post official details about when and where the pre-defense public lecture will take place as soon as everything is official.

All that remains are final edits and revisions leading up to preliminary submission six-weeks prior to the defense. Then, I sit and stew (and prepare for the public lecture) while my committee reads over the document to determine if it is ready for defense. I receive official word two weeks prior to the now-tentative defense date if things are going to happen.

Deep breaths!

Thursday, January 08, 2015

And now you know the rest of the story.

Written earlier this afternoon. Apologies for verb tense issues and typos.

I need to write this down while it's still very raw. I am hoping that writing about the past few days will help me make sense of what happened and will give me some clarity as to where things are going from here. I'm hoping that blogging about this will give all of you--beloved, supportive friends and family--a better idea of what we've been through, and will give me a chance to process the feelings that are still (even now, as I type) bubbling over. Tears. So many tears. What a hard few days it's been.

And in the back of my head, I keep telling myself she's going to be fine. She has to be fine. I talked for a while yesterday morning with the grandparents of a young boy on our floor at the hospital; the boy had been hospitalized for the past four years both in Detroit and now here in Miami as a result of leukemia and a flesh-eating disease that was wreaking havoc on his face and sinuses. I looked at my little Trudy in that moment and thought, controllable seizures. That's it. A seizure disorder, with more tests to come. Count yourself lucky. I wished that family strength and healing, knowing that they had a much harder road ahead of them than any of us could imagine.

But I'm getting ahead of myself.

My Mom taught me whenever delivering bad news to start by saying "everyone's okay." So, let's begin there. Everyone's okay. We are now all home. Trudy is napping. Being home is the best possible thing. We all got some good rest last night after two nights away.

Let me tell you about the past few days.

Monday, January 5

Trudy had been battling what we thought was a cold, combined perhaps with a growth spurt and some teething, since January 1st. She'd been sniffly and very sleepy. January 3rd and 4th had seen marked improvement. She was sleeping less and seemed more like herself. We were gaining confidence during those days that she was on the mend. On the 5th, however, she woke up with a rash covering her torso, arms, and neck. Bryn also noticed something funny happening when he took Trudy out with the dogs for their (the dogs!) morning pee -- he thought maybe she'd sneezed, or got something in her eye. Looking back on this now, we realize that this was her first seizure.

We were not able to get in to see our pediatrician but scheduled an appointment that day to see another pediatrician in the same practice. We loaded up and took the metro over to the clinic for a 1pm appointment. Here is Trudy on the train, happily eating lunch:


While in the waiting room at the pediatrician's office, I was holding Trudy and showing her the fish tank in one of the rooms when her eyes started blinking rapidly and she went limp. I yelled, "something's happening... something's not right." One of the nurses quickly ran out, grabbed Trudy, and rushed us back into one of the exam rooms. The seizure continued for a few more seconds once we were there. Several doctors and nurses assembled. I was terrified, and Bryn quickly realized that what just happened was similar to what he saw earlier that morning. The doctors told us to take her straight over to the ER (which, thankfully, was only a few blocks away; our pediatrician is on the UM medical campus) for a full "work-up" to sort out what just happened.

We walked our way over to the Holtz Children's hospital--the same place where Trudy was born just over 16 months earlier--and presented ourselves at the ER. We were quickly assessed and taken into a room to see a doctor. They took her vitals and a history from us. As we were waiting, Trudy had another seizure which the doctors were, again, able to witness. As horrible as it sounds, if this was going to happen, I was thankful that the episodes were occurring in front of people who had the knowledge and training to help us out.

The next few hours are a bit blurry. We had arrived at the ER around 2pm and ended up staying there until 9pm, when we were finally admitted to the hospital. There were so many tears. Bryn and I were so scared. It was awful to have to hold down a terrified, exhausted baby as they inserted an IV in her arm. She was so tired but couldn't sleep (who could?) amid the chaos, noise, and bright lights of the ER. Every stranger who came in wanted to poke or prod her. Rectal thermometers. Blood pressure cuffs. And the uncertainty. Oh, the uncertainty. That was the scariest part for us. Brain tumor? Brain cancer? Epilespy? My mind immediately went to the worst possible outcomes. Several times I felt myself, in some deep dark place, starting to say goodbye to this precious thing. I had to stop. Just because we didn't know much at this point didn't mean she was going to die. I felt my heart breaking over and over again. Bryn was a mess, too. The time in the ER was, by far, the darkest chapter of this entire ordeal.

We moved out of the initial triage room into another observation room still in the ER. We were told that Trudy would have a CT scan and a spinal tap to provide more information. They gave her a mild sedative (which she snorted into her little pink nose) and we were whisked away to the CT scan room. She would not be fully sedated but needed to be still for the scan. I stayed with Trudy the whole time, sang her songs, and rubbed her head while they were getting ready. She was so brave and calm. I remember singing her two songs, standards in our repertoire:

You are my Trudy, my little Trudy
You make me happy when skies are grey
You'll never know, dear, how much I love you
Please don't take my Trudy away

Oh, god. What was I singing? I had to stop that one as soon as the final line sunk in. It was like a prayer in that moment. Please, please don't take her away.  Never had those words had more meaning than as I watched her all wrapped up, having her brain scanned.

The other song, a bit lighter (complete with frog-appropriate tongue movements):

Mmm-mmm went the little green frog one day
Mmm-mmm went the little green frog
(And so on...)

Bless her little heart, she started doing the tongue movement back at me every time. I don't think I'll ever forget that tender moment. The most precious thing in my life. Still playful, despite the circumstances. She made me smile in a moment when neither of us really knew what was going on. Trudy gave me hope, as I struggled to be optimistic and brave for her.

After the CT scan, a spinal tap. I had to leave the room for that one, but I could still hear the poor thing screaming just down the hall. After that, some antibiotics. At this point, our dear friend Niki came to help us out. What a gift, that girl is -- a true, true friend. She took Bryn back to our house to pick up some basic things and also took our pugs over to her house. When she first showed up, she had water and snacks in hand. (Niki, I can't even express to you how much that helped.)

After the exams were over, Trudy seemed to be in better spirits. I nursed her and we had a little rest. She ate some cheerios, cheese, and fruit, and was starting to get restless in the ER room. We took her out for a little walk and she seemed so happy just to be able to move and see people.


Around 9pm, we were admitted upstairs. We eventually got Trudy to sleep in her hospital crib. Bryn and I took a breather outside the room, and sat down together to talk, strategize, and eat. Trudy's sleeping was short-lived that night due to the constant interruptions to take vital signs and replenish her IV antibiotics. Bryn and I took what time we had to update family and check-in with each other. What was going on? How long were we going to be here?

We also caught the last few minutes of the world juniors hockey game. Priorities, I know. It was really great to see Canada take the gold. Bryn and I had watched every game in the tournament leading up to this big final. As silly as it may sound, those few moments of normalcy really lifted our spirits.

Where things stood, diagnosis-wise, at this point: it appeared that there might be a link between her cold/flu sickness and the seizures. Tentatively, it was looking like she might have roseola--a viral disease that can cause harmless (but scary, especially to parents!) febrile convulsions. We had no test results. The doctors were still not convinced of this diagnosis at this point since Trudy did not have any fever with the seizures (which, at this point, were still being described as "episodes.") More would be known once the CT scan results were back, the spinal tap fluid was assessed, and an EEG was performed to examine her brain activity.

Tuesday, January 6

The wee hours of the morning on Tuesday were among the worst. We were all exhausted. Trudy decided (and who can blame her) that she didn't want to be alone in the hospital crib. She was desperate to rest, so I opted to nurse her while lying down with her on the oh-so-comfortable convertible chair/cot in the hospital room. Thus began what ended up being a marathon of near non-stop nursing. My nipples are still aching. Looking back on things now, I breastfed Trudy more in the past few days than I probably have in the last few months.

(And an ironic (?) side note: The night before Trudy first got sick (December 31), I decided, for the first time in her life, to not breastfeed her before bed. Then, the next morning, she wakes up sick. I know, I know -- a coincidence. But the paranoid, irrational part of my mother brain can't help but feel a tiny bit guilty... We'd also started working to move Trudy from two naps down to one. Now, everything is out the window as we focus on her recovery.)

Trudy had two more seizures in the early hours of Tuesday morning. They both happened while she was asleep, which was really troubling. We called the doctors in both times they happened but they couldn't get in fast enough to witness them. They encouraged us to try and video record the seizures when they happened.

Morning came and Trudy was still pretty miserable. She had a bit of a break around 8am that day when she wasn't hooked up to an IV, so I took her out for a walk around the unit. What a sad place. There are few places more depressing than a pediatric floor in a hospital. Several screaming kids. Sad-looking parents. A lot of hustle and bustle by all levels of doctors. Since Holtz is a teaching hospital, there were medical students and interns everywhere, in addition to the residents and attending doctors. After our third or fourth lap around the unit, Trudy and I stopped to visit with the nurses at the station. While we were chatting, Trudy had another seizure. This one was far worse than the several earlier ones. It lasted for a full minute, involved more localized eye-twitching on her left side, and involved her whole body shaking. Bryn had been resting in our room, but ran out to catch the whole thing on video when he heard what was going on. Scary stuff. Trudy took a little while to come around after this event and, as you can image, was exhausted.

We were visited later that morning by pediatrics rounds and told of "the plan" for the day. At that point, the attending physician was not convinced she had a severe disease like meningitis, nor did they think that the episodes were caused by roseola due to the absence of any fever. An EEG was scheduled for later that day. The spinal tap fluid needed to be cultured and re-cultured over the course of several days, and then she'd need more bloodwork as the days progressed to rule out any viral infection.

The EEG was a pretty intense experience. A team of guys came into our room to set-up the sensors and a recording device. Trudy was due for a long-study, which meant she would be hooked up and room-bound for 2-3 hours while the sensors recorded her brain activity. Anyone who has interacted with 16-month old babies, even sick 16-month old babies, knows how difficult it is to contain the hurricane of activity and will-power that drives their little bodies. I knew it was going to be a tough haul. The sensors were hooked up to her head and then she was wrapped in this sock that covered the sensors and some receiving device. The whole contraption was very heavy.


We called Trudy our little "Rastaman" with the world's most expensive dreadlocks.


Thankfully, I was able to nurse Trudy to sleep a few times during the EEG. The Rastman headdress left her with a very sweaty head. And once the sensors were removed the following morning (they had to keep the thing on her past the 2-3 hour test just in case they had to repeat the EEG) she had two contact burns (or something like that -- two blisters) on her poor little forehead.

The entire ordeal was video recorded, too, so they could see what was happened and compare it with the brain activity read-outs. They definitely captured me scarfing down a scoop of Trudy's mashed potatoes which arrived on her lunch tray during the study. Trudy had fallen asleep on me while nursing and I was STARVING. I don't think fake mashed potatoes with suspicious brown gravy have ever tasted so good. I think I may have also picked my nose once or twice. And Bryn definitely farted. Oh well. I'm sure they've seen worse?

By the end of the day, Trudy seemed to be doing okay. She had another seizure while the EEG was recording which was what they'd hoped would happen (not that anyone wants her to have seizures, but if the machine was recording when it happened they'd be able to see the corresponding brain activity.) I was actually nursing her when the seizure happened and almost lost a nipple. Poor little thing clamped down as soon as the seizure started. Another mama merit badge?

Trudy sat up with me around dinner time and ate some of the hospital dinner - a strange steak-like meat with familiar gravy, accompanied by vegetables. I was so hungry that I stole a few bites here and there. I guess if you're going to eat anything questionable, a hospital is the safest place to take a chance.


Now, a kind of fun and unexpected thing happened throughout the day on Tuesday. Apparently it was El Dia de los Reyes and the hospital was celebrating by having three toy deliveries (one by each of the three "wisemen") throughout the day. Trudy was resting during two of the deliveries, but has come home with some really lovely toys which she was able to enjoy a bit while in the hospital. The first delivery really got to me. Was I now a parent of a sick kid? A kid who qualified for this kind of charity? I pushed those thoughts away and tried to just be grateful for the generosity. It really brightened the day and was an unexpected surprise. I guess if you have to be in the hospital, we picked a pretty great day to do so.

By the early evening, I was becoming increasingly agitated at the lack of information and was feeling really out of touch with whatever was happening with the doctors behind the scenes. I requested to talk to the doctor and expressed my feelings of helplessness. I felt like we were just sitting around, watching her have seizures and doing nothing. She said she'd keep us updated as information came available and told me that these things can take time to diagnose since the diagnosis is dependent on test results.

Our guardian angel Niki came by that evening about the same time Bryn left to check-in at home and pick up some more stuff for our stay. She and I walked and talked and I updated her on what had happened that day (she works as a Physician's Assistant). As we were coming back to our room, I saw our doctor and she said she needed to speak with me. The EEG results had indicated that Trudy's episodes were indeed seizures. With that information, Trudy would be started on an anti-seizure medication and scheduled to have an MRI. It was still very unclear as to what was causing the seizures. Though an MRI was the next step, there was no guarantee that it would show anything to explain the seizures.

That night, Bryn provided our broader network of friends and family on Facebook with an update. The messages that came in meant the world to us. Each note of concern and encouragement helped us remember that, no matter what happened, we were surrounded by people who would help us in any way they could. Thank you. I hope to have the time to talk to each of you individually. For now, please accept my (and Bryn's and Trudy's) sincerest thanks.

Wednesday, January 7

Wednesday early morning was a bit better than our first night/morning in the hospital. Bryn brought an inflatable mattress for me and Trudy to share, so I could nurse her to sleep and then continue to lie with her. We got some sleep from about 9pm to 3am, when the nurse came in for bloodwork. During that, Trudy's IV came loose which required us to take her to get it adjusted. Since she was awake, I took off the damn EEG sensors and sock (REBEL MAMA), and cleaned off her poor little sweaty, sticky head. They'd put some kind of wax-like substance under each sensor. Despite all that early morning chaos, I was able to get Trudy back to sleep around 4am until 7:30am or so. 

I talked to Niki and my sister that morning (both more versed with medical lingo than I am) and wrote down a list of questions to ask during the morning rounds. Bryn stepped out to get coffee and, just as Bryn disappeared down the elevator, the neurologist appeared. He did an evaluation, watched our videos of Trudy's seizures, and talked about next steps. I was happy to tell him that the last seizure was Tuesday around 4pm; it appeared that the anti-seizure medicine was working. He told us that unfortunately there was no MRI time available this week. He recommended we be discharged and return as out-patients for the MRI. I expressed my concerns with the lack of diagnosis and he reassured me that he was comfortable sending us home with Trudy's seizures medically managed.

Morning rounds came and I was equipped with a really good list of question to ask. The answers provided a lot of clarity. Trudy's spinal tap fluid was clear; two days' worth of cultures confirmed this. Blood work was normal. EEG confirmed seizures. There was no way of knowing if whatever sickness she was fighting prior to the seizures coming out were related. Her rash was gone, so she could stop taking antibiotics. The pediatrics attending doctor felt confident sending her home with follow-up care.

That afternoon we were discharged, following a lot of questions and answers about where we were going from there. Next steps: schedule the MRI, follow-up with our pediatrician this week (we are scheduled to see her on Friday), follow-up appointment with the neurologist after the MRI, anti-seizure medication for a minimum of two years (which we picked up yesterday at the drug store.) I still have lots of questions for the pediatrician and have yet to fully review some of the follow-up seizure care documentation with which they sent us home.

Last night we all slept. Trudy was in bed by around 6:30pm following a nap in the Uber car home from the hospital. (Our driver was an awesome guy--a Cuban veteran who served two tours in Iraq and had two young kids of his own. My favorite thing about that trip home was listening him say the word "hooker" with a Cuban accent, while he described the sordid clientele he sometimes encounters.) Bryn and I were asleep sometime around 9pm, and we all slept until about 7:30am this morning. Trudy is doing just fine today, although she seems a bit wobby/dizzy and quite tired. Her medication has these listed as side effects especially for the first four weeks of taking it, so we are trying to remain confident that everything is okay.

Some general reflections:
  • It is such a delicate balance as a parent between being overly cautious and not cautious enough. When do you ask for help? When do you tell yourself "everything's going to be okay." I guess I'd rather be "that parent" -- you know, the one who over-reacts and takes her hyperventilating baby to the ER only to find out the baby is constipated... true story -- than under-react and regret it. I'm glad Bryn and I trusted our guts and took her in. How "lucky" were we that the first real seizure happened with a host of doctors and nurses only a few feet away.
  • It was really weird being back in the hospital where Trudy was born and where she was kept for a week or so after she came out. It brought back a lot of tough memories from that time. As was the case during Trudy's first stay, both Bryn and I found the experience of being institutionalized to be incredibly challenging. It is hard to surrender to a system that is, at times, more restrictive than it is helpful. And it is hard to know when to speak up and when to stay silent, especially since you are surrounded by people who possess medical experience and knowledge necessary to help your child. I did my best to advocate for Trudy at every step of the way, which really came down to two things: trying to preserve her sleep and avoid any unnecessary interruptions. And, second, breastfeeding the poor child. I quickly realized that nursing Trudy throughout this experience provided her comfort and security in a setting where those things were absent yet desperately needed. 
  • A difficult part of dealing with all this was receiving some information to suggest that Trudy was "developmentally behind" because she is not yet fully and independently walking. This was really troubling and, as far as Bryn and I are concerned, not at all accurate. Trudy is not developmentally behind. And this isn't just crazy parents thinking their child is perfect no matter what. She's a bit of a late walker, yes, but she's fine. She gets better at it every day. I'm eager to talk to the pediatrician about this. Our experience since Trudy's been on the anti-seizure medicine is that she's a bit wobbly on her feet but our understanding is that this is an expected and normal side effect.
  • Again, a big shout-out to our dear friends Nick and Niki for all of their help throughout this. Amazing, lovely people. Generous, kind, and so thoughtful.
  • SO much love to all you, friends and family, who texted and called and e-mailed throughout this ordeal. I felt so lucky to pretty much be in constant text-communication with my sister and Mom. And I know Bryn kept his folks and siblings in the loop throughout. Our dear neighbors also said they prayed for us, non-stop, as soon as they found out about Trudy. It means so much. Thank you again.
  • We have heard from several friends and family who have kids/know people with kids who have experienced similar seizures but grew out of them at some point. We are eager to talk to these folks about their experiences and remain hopeful that Trudy's experience will be the same.
  • From here? Pediatrician visit tomorrow. MRI is scheduled for mid-February but we're hopeful we can get her in a bit sooner. Our original neurology appointment was scheduled for early February but will need to be rescheduled in light of the later MRI date. Trudy gets meds twice a day. And hopefully Bryn and I can stop staring at her every minute of every day, just in case something happens...
  • I have to give Bryn the hugest shout-out of all shout-outs. He was an amazing partner, support, and dad throughout this entire ordeal, and continues to demonstrate how much he loves that little girl. If I ever doubted his commitment to Trudy (which I don't think I ever have), this experience removed any questions. We cried together, we hugged each other. We managed to coordinate breakdowns so that we were never both in pieces. I feel so lucky to have him as a life and love partner, and Trudy is so lucky to have him as a dad.
Oh, and one happy surprise we came home to after leaving the hospital: our landlord installed a 14' x 21' cement patio in our backyard.


Hello party pad! 

At the end of the day, despite everything, we still have so much to be thankful for. Trudy is going to be fine -- I now have to tell myself that every day. Otherwise, I won't be able to function. I love that little munchkin with an intensity I've never known before. I look into her eyes and see so much that lies ahead for our entire family. I'm going to do everything in my power to make sure Trudy has the brightest future she can. And I don't ever want to again have to think about what the world would be like without her. She's too important, universe, you hear that? She has so much left to do.

Sunday, January 04, 2015

It's (still) the most wonderful time of the year

A little late but better than never... 


Happy Holidays from Trudy.


As you can see, our Christmas photo shoot (middle photo) did not go as planned!

Early December Christmas

Bryn and I decided to stay in Miami this year for Christmas. In early December, Trudy and I flew from Miami to Victoria to visit for one week with my parents and my sister (and her family) in lieu of together-time later in the month.


It was a wonderful week to spend together in such a beautiful place.
 A highlight of the trip was getting the three cousins together for a photo with Santa!


We had intended for the photo to be kids-only, but neither Trudy nor Lulu (on the far right) was interested in that. Henry (second from the left) did very well! Look at his precious little face. He asked Santa for a Spiderman watch.

Trudy was FASCINATED by her older cousin Lulu; there are six months between them. All she wanted to do whenever Lulu was around was sit and watch her, or reach out to touch her magical unicorn face. It was hilarious. We stuck 'em in the bath together one night, which was loads of fun.

Tasteful nudes.
It was a long 13-hour travel day home and back, but it was totally worth it. Trudy did really well on all of the airplanes and neither of us got sick while we were away! Hurrah! And Trudy also adjusted to the time change with little difficulty.

Thank you to my parents and to Greta and Mark for feeding and entertaining us. It meant a lot to me and Trudy to have an early Christmas dinner all together. I also really enjoyed going to this awesome Christmas craft show with my Mom. It helped me get the majority of my Christmas shopping done in one place.

Broadway in Miami

Shortly after returning from Victoria, Bryn and I hired our first non-family babysitter for the Trudes and headed out to see "The Book of Mormon" at the Adrienne Arsht Center here in Miami.


I won a Twitter lottery so we got great seats for a really good price. We ended up sitting on the main level right near the back behind the light/sound board. It was cool to be able to see the music director on the control board's screen and neither of us found the lights to be distracting at all. 

What a great show it was/is! It's been on my must-see list for quite some time.

Christmas in Miami

The sun is shining, the grass is green
The orange and palm trees sway
There's never been such a day
In beautiful M-I-A...

We stayed in Miami this year for Christmas and had the distinct pleasure of hosting Bryn's youngest sister from Montreal for the holiday. Her visit was full of trips to the beach and lots of Christmas fun.


Bryn and Ariane also went to a Dolphins football game while she was here, 
and we hosted a bunch of friends for a rib dinner.

Bryn is still off for one more week! We've spent the holiday relaxing and being together as a family. This coming week we plan to take care of some business -- pesky things that need to be done like getting the bikes tuned up.

Christmas Crafts

I did a lot of crafting this Christmas. I made Trudy a stocking from a felt embroidery kit. I added and changed several things and was thrilled with the result.


I made six felt orrnaments a from kit.
(It made two sets of the ornaments pictured below.)


I made several of my own felt ornaments, for which I designed my own patterns!


I also did a few felt gift card holders, inspired by some crafting I did last year.


Trudy and I did two Christmas crafts. The first were hand-print ornaments
(inspired by this site).


The second were footprint penguin cards and pictures (inspired by this site).


I also made my first recycled t-shirt rugs with lots of help from this site!



They ended up being very popular gifts, to my surprise! I also made some hand-stamped and colored address labels, of which I neglected to take pictures.

Trudy

Though she's currently batting some kind of flu/cold/teething/growth spurt, little Trudes is growing and becoming more amazing every day. She is now 16.5 months and is just starting to have the confidence and coordination to walk. Lazy baby no more!


She's talking more and more everyday which is fascinating and terrifying! Recently, she's been saying "burp" and "nose" quite a bit, in addition to her ever-growing catalog of more typical baby words like "mama," "dada", and "baby." She knows how to fetch books, loves saying "gog" for pretty much any animal, and is always excited whenever an airplane flies overhead.

In the few days leading up to Trudy getting sick, we were working on dropping her morning nap and eliminating her pre-bedtime nursing session (yes, we are still breastfeeding!). I'm trying not to view these changes as bringing about her sickness... hopefully it was just a coincidence! We're going to keep moving forward with making these adjustments once she is fully recovered. Ideally, we'll go to one nursing session a day in the morning and one nap a day in the afternoon.

Trudy and I (and Bryn, since he's off work right now) continue to do a lot of walking. Check out this shot from a recent trip to UM's campus. I caught a bird in mid-flight!


Trudy is such a bright, happy little soul. She constantly makes me smile.

Keeping Trudy entertained while we late in line at Michael's.

Me - Work, Life, School

I've been in a holding pattern with my dissertation. I've finished a first round of formatting my references and have begun working on formatting the larger document (appendices, table of content, etc.) keeping in mind that there's still lots of changes to make as revisions come in. 

I am looking forward to presenting two papers at a conference in Tampa in February. One is a solo paper taken from my dissertation and the other is a joint paper with a bunch of folks from UWO. My parents are flying down for a few weeks to help take care of Trudy while I am off acting all smart and whatnot. I am REALLY excited about this conference mainly because it will give me an opportunity to get dressed up and share my research with adults. Don't get me wrong, Trudy's a great audience, but she just doesn't seem to "get it" quite yet... maybe it's me? My prose are a bit too heady for a 16 month old? 

I am looking forward to getting back into a regular exercise and eating routine in the next week or so. I'm also going to start getting up again at 5am to write and work on dissertation formatting and my research assistantship projects. To help eliminate all distractions, I've spent the last few weeks deep-cleaning the entire house and also finished a big organization project that I knew would be a tempting distraction. I've had three giant Rubbermaid bins of mementos stashed away in a closet now for quite some time, each bin full to the brim with photos and certificates and other keepsakes. I took FOUR SOLID DAYS last week to sort, shred, and organize their contents. It was an epic project that is not fully done, but it's close. I still have a box full of photos to sort through with my Mom when she's here; I need some help sorting them by date so that I can put them all into photo albums.

This process of organization took me on a really meaningful journey through my past--a journey that caught me off guard several times when confronted, for example, with the faces of departed loved ones. I also really struggled to keep artifacts from tougher times in my life like junior high school when I was so unhappy, and photos from university when I started getting really heavy.


Was I really ever that heavy? Who is that person? I spent so much of my life out of touch with body. The photos that remain from that time of my life really scare and challenge me. How did Bryn fall in love with *that* person? How do I make sure I never go back to feeling that unhappy and disconnected from myself?

I had to ask myself, several times throughout the process: should I only keep things that remind of me of the good times? Are these the only memories worth keeping? In the end, I did my best to keep things that would remind me of important times both happy and sad, and left myself with two bins of things that meant a lot to me. I'm really glad I pushed myself through the process of culling this too-long-hidden stash. I feel like I did it at the right time, too, as a new year begins--a year that I hope will hold a lot of memories upon which I will one day fondly look back.

Spending time with all of these carefully preserved items reminded me of a few important things as I move forward on my journey as a Mom. First, I feel so thankful to my parents for keeping things from my early days. Going through report cards and photos and early artwork that have been kept for 25+ years made me feel really loved, and reminded me that I've had this wonderful team of family of friends with me from the very beginning. And, secondly, it made me think about what kind of memories I want to help keep for Trudy in these early days when Bryn and I serve as her main life chroniclers. I want for her to one day be able to open a box filled with memories--a window on her past--and for her to feel, without a shadow of a doubt, that she was loved, beyond measure, every day she spent on this earth (especially the days she can't remember for herself.)

2015. Can you believe it? 
The future is here.


I'm optimistic it's going to be a great year, folks. I'm thinking about setting some goals for myself but I'll chat about those in a later post.

Monday, December 01, 2014

After three months away...

(This post was written yesterday afternoon.)

My last blog post was almost three months ago. When I started this blog, I used it as a tool for self-reflection as I worked to lose weight, and as a means of sharing my experiences along this journey. So much has changed since my first blog post; lately, I've been thinking a lot about this blog's place and purpose in my life. 

Blogging about blogging. Yeah. That's happening.

Originally. this blog was intended to help me stay accountable with my weight loss and exercising. It also provided me with a way to track my accomplishments, which have included losing a whack of weight. But now? I don't know. I took three months away from the blog.

Since Trudy was born, my blog posts have mostly been about her. Losing weight and exercise have not been the sole focus of my life now for quite some time. Recently, I've used this blog as a way to update friends and family on our new little family's life. But I came to a point where the blog was no longer feeling like it was helping make me feel connected. It started feeling really one-sided and lonely. It did not facilitate much, if any, interaction. I thought that by sharing photos and experiences via this blog that I would be left feeling more connected with everyone I care about, most of whom are thousands of miles from Miami. (Note: This is not a commentary on any of you beloved readers. This is merely my thoughts about blogging functioning as a means of interaction. Perhaps I could work harder to make the blog more interactive? Ask questions? Is this the point of the blog? Or was I/am I perhaps seeking a kind of interaction that my style of blogging simply cannot provide?) 

My recent blogging experiences have felt like nothing but unnecessary work. After blogging, I was left feeling the exact opposite. I realized, following my post in early September, that blogging had become a chore. Without any big announcement, I stepped away. No one really noticed. I freed myself of any feelings that I had to post. 

I've read some of the blog postings from the last year and see them as blogging for blogging's sake. They also reflect a lot of inaccurate, selective representations of a chapter of my life that has been incredibly challenging. Since Trudy was born, this blog has been a reminder of how different things are from how life was when I weighed 150 pounds... when I was exercising twice a day and eating a ridiculously low amount of calories. Truth be told? I've longed for those days, especially in the last year. I long for the freedom to focus on optimal health. I long for the simplicity and the feeling of accomplishment that came with totally transforming my life. But maybe, even then, blogging was not a good thing. Did it call too much attention to food and exercising? Sometimes I wonder if, while serving as a helpful tool for reflection, it also contributed to what was (when I was at my lowest weight) an unhealthy obsession with tracking my food intake and exercising.

My blog represented a success story with a lovely story arc. Girl gets super fat. Girl loses 110 pounds. End of story, right? But then girl has baby and everything changes. How does girl reconcile everything, in light of this? Giving birth to Trudy left me face-to-face with a unwelcome guest--memories of a former fat self that I thought I'd left behind. I had hoped I was done with fat Jill. She was lost. She was miserable. I'd hoped that she could only ever be located in my rear-view mirror, found only on the "pages" of this blog.

I love Trudy, don't get me wrong. She is the best thing in my life (tied with Bryn, of course.) But I think it's time for me to get real--if I'm gong to blog, it needs to be truthful. So, yeah, I suffered from the baby blues for a few weeks after having Trudy, as a lot of Mom's do. But my baby blues developed into full-fledged depression. I think this happened in "large part" because of the my weight gain. And when the baby and baby-related weight didn't just melt off in a matter of minutes, I fell deeper and deeper into a dark, hopeless place.

And now I'm crying at Starbucks.

I am not at all ashamed to say I was depressed. Many things have led to this less-than-perfect storm. On top of the challenges of bringing a baby into this world, I was doing it with very little support or family nearby. (Note: This is not at all, in any way a comment about Bryn. He has been the best Dad and partner I could have ever asked for on this journey. But we are, by virtue of our situation living here in Miami, quite isolated.) I fought to breastfeed Trudy; it took me several AWFUL weeks to get it figured out. Then, the darn baby wouldn't take a bottle. I've done EVERY feeding (yes, we are still going!) since the tiny human came into this world. I've been more-or-less attached to her for fifteen months, leaving me (by choice, yes, I know) with little time to get away. I gained 42 pounds with the pregnancy. I was left feeling hopeless and fat, with little opportunity to address the situation in the way I wanted to (quickly... lots of exercise... restricted eating.) I also had the whole pressure of the dissertation looming overhead. I felt overwhelmed and constantly anxious. I felt unable to write, to focus which only made everything worse. I never knew when I would get a chance to work since Trudy's schedule was so unreliable.

And the blog. Oh yes, this blog. It served as a constant reminder of what I saw as me being a huge failure. I had "let myself go." I hadn't bounced back to my super-sporty ideal self within three minutes of giving birth. I was a mess. My negative, critical self-talk only made things worse. I tried to make things seem like they were amazing and happy via this blog... but they weren't.

Right around Trudy turning a year old--around the same time I stopped blogging--I started feeling able to make some really positive changes. I felt rested and Trudy's schedule was a bit more reliable. I finally felt like I had the energy to focus on losing weight and exercising again. I made a plan to work on my dissertation EVERY DAY, no matter what. And I started seeing someone -- a psychologist. I started talking about what I was going through and gave myself permission to stop judging and hating myself. 

Just as all of the negative things combined to make me totally miserable, all of these positive changes brought me out of a dark, terrible funk.

At the beginning of September:
  • I started tracking my food intake and set a daily caloric intake limit. I allowed myself some flexibility but stayed diligent about 80% of the time.
  • I started exercising. I went to the gym as much as I could and started running again.
  • I started getting up nearly EVERY DAY at 5am to work on my dissertation.
  • I started talking to Bryn about my feelings and asking for help when I needed it.
  • I started crafting. Art therapy, seriously. It may sound crazy, but I started little projects that helped my mind calm when I was feeling overwhelmed and left me with small accomplishments that I could share with others.
Crying again. 

Let me tell you what all of these little changes have done for me. Small changes which I have maintained now for almost three months:
  • I've lost nearly 30 pounds. Together with the 12 pounds I dropped in the first few months after Trudy was born (including delivering her little 7-pound self), I am down right near 165 pounds, where I was before I got pregnant! I still would like to lose a bit more, but I'm giving myself time and space to let this happen. I've been working towards eating and living such that I do not suffer every day. It takes longer to reach my goals but I'm doing it in a more sustainable way.
  • I've kept exercising, though an upper-back injury (muscle strain, nothing structural) has taken me out of the gym. I've been doing physio for a bit and am feeling about 90% "back" to normal. I still run whenever I can, usually at least once a week. I also walk 3 to 5 miles each and every day. When I don't know what to do with Trudy or feel like I'm overwhelmed, I walk. It works for me!
  • I have completed a FULL DRAFT (oh god, really crying now) of my dissertation. 7 chapters, 52,601 words. Still lots to do, but I'm excited to be moving forward.
  • I feel good. I feel hopeful. I don't cry as much as I have in the past few months. I am looking forward to the future. I enjoy Bryn. I enjoy Trudy. I am starting to enjoy life.
And, gosh darn it, I'm really proud of myself. I need to pause and take this opportunity to say that I've worked really hard to get where I am. I am working on not being too hard on myself. I need to celebrate these victories. I am in a good place right now, and I feel confident that I am heading towards a GREAT place. Beautiful family. PhD in hand VERY SOON, I hope. Job, maybe? In the future? Strong body, strong mind. HEALTHY. Happy.


You know, looking back on all of this, I've learned a lot. It's okay not to be happy. It's hard not to be happy, but it's okay. Part of what made my struggle with this extended postpartum depression was that I was constantly feeling like there was something wrong me because, no, Taylor Swift, I couldn't just shake it off. It was something more that required me to talk steps to help myself. Having Trudy and dealing with everything that happened as a result of this life transition has made me stronger and wiser. My body is different as a result of childbirth. And my mind is also different. This whole process has changed me and continues to change me in ways that I never could have anticipated.

Ups and downs. Happy and not-so-happy. This is the way things will go. Weight will be gained, weight will be lost. NOW IS NOT FOREVER -- this is a powerful mantra that I recently adopted. It reminds me to treasure those sometimes fleeting, happy moments and gives me perspective when the bad stuff happens ("this too shall pass.") The best thing I can do for myself, and model for my beloved Trudy, is be flexible to deal with life's unpredictability. I think the postpartum depression hit me hard because I was dealing with more change than I could handle. I felt I'd lost my body and my mind. I was far from "home." I felt unable to do any of the things I needed to or wanted by virtue of the overwhelming amount of work that Trudy required at the beginning of her life/my life as a Mom.

So, what's the verdict with the blog? From now on, I'm only going to blog when I want to. I'm not going to blog when it feels obligatory or like a chore. I'm going to use the blog as a way to reflect and share, but I'm not going to expect it to serve as a way to connect with people. When I miss my loved ones, I'm going to call them or write to them. The blog, really, is for me, and about me. If it facilitates interaction, that's awesome. If my musings and reflections are of interest and benefit to someone else, even awesome-r.

Speaking of obligatory blogging, I should note that I do not have the energy nor interest this year to devote to Gym Christmas. Maybe next year? We'll see. I am so thankful to those of you who asked about it, and encourage you to formulate your own challenges this time of year, should you feel so inspired.



Some updates from the last few months.

Trudy continues to grow! She is not quite walking but we anticipate she'll take her first steps very soon. She is scooting and stands by herself every now and then!

As I mentioned earlier, Trudy's into a nice schedule these days, though I'm worried she may drop her morning nap in the next little while. She's been sleeping like a champ at night (12 hours solid most nights) and two naps in the day (usually 1.5 hours each), which means I've been able to get lots of work done most days.


Trudy is starting to talk more and more. Here she is at 13 months (mid-September):


We had a great Hallowe'en. Trudy went as a "gog" -- her favourite word and animal.



We went on a trip in early November to Milwaukee, WI for Bryn's annual theory nerd gathering. Trudy had a great chance to hang out with some of her favourite theory babies!


Trudy's been starting to play well by herself. She also likes to talk to herself.
Check out this video from right around 14 months (mid-November):


We just got back from a trip up to New Smyrna Beach for Thanksgiving with some wonderfully generous and loving friends. On the way back to Miami, we stopped in on some friends in Altamonte Springs and met their new two-month old son! Another theory baby!


Like I said, Trudy's getting close to walking!
Check out this video from just a few days ago:


In school-related news, I've had two papers accepted to a conference in Tampa in February 2015. One is a paper taken from my dissertation and the other is a joint paper on applications of cognition research to music education. 

Bryn and I also both had entries published in a SAGE encyclopedia, which arrived in the mail just last week. He did four shorter entries while I did one big one (2500 words) on community music:


I've also started volunteering once a week in a local school's music magnet program. I help out in the classroom with whatever the teacher may need!



So what's next? Well, after a few months with relatively little traveling, Trudy and I are off on a big adventure on Wednesday. We are flying to Victoria, BC. 13 hours (including 3 flights) each way. Sadly, Bryn has to stay behind and work. We'll be gone for a week.

As part of my self-imposed art therapy, I've done a whack of Christmas crafting. I'll try to share some of my creations in a future post.

And to close things out, a sneak-peek at Trudy's Christmas shoot:


Happy December!