Month after MSTue, 15th Sep '20, 11:40 pm::

After I helped Juliet get into bed tonight, I asked if there was anything else she wanted. She replied "I just want to feel normal." I laughed "It's 2020 honey, there's no such thing as 'normal' anymore for anyone."

It's been a month since she was diagnosed with Multiple Sclerosis and her recovery has been slow but steady. She's seen multiple neurologists, taken additional MRIs, got her blood drawn on at least five different occasions, had multiple optical tests at ophthalmologist, gone to physical and occupational therapy twice every week, all while trudging along with a walker and wearing an N95 mask. Immunodeficiency is no joke.

She is scheduled for a Friday morning infusion of Ocrevus, a disease-modifying drug, pending insurance approval. Otherwise next week or so. She will remain on this drug for life but the great thing is, after the initial two doses, it's only twice a year infusion instead of multiple pills every day. In best-case scenario, she will regain almost all of her past strength and abilities over the next few months and not experience severe MS flareups again, at least not for decades. Hopefully by then, there will be even better treatments available.

While we're plodding through the medical quagmires, we're doing our best to not let any of this effect the kids. Naveen is doing well with virtual school, thanks to his wonderful kindergarten teacher, Ms. Lintz. Leela is 10 months already and has been crawling all over the house this week. She is starting to pull herself up to stand and though she has the strength, she's still learning how to balance herself. Watching Leela smile every time Naveen walks into the room makes us appreciate how lucky we are, regardless of how we feel on a day to day basis.

To help ease some of our childcare and housekeeping stress, I've been looking for assistance for the past month. Juliet's bestie Rebecca has been an absolute angel, dropping everything to come assist us the moment we need anything. Our neighbor Brian has taken Juliet to PT/OT when I haven't been able to. Juliet's cousin KD drove over earlier this month from Orlando and stayed with us for a week and she is coming back again for a couple of more weeks. Many of our friends and families from out-of-state have vehemently offered to stay with us and help out but unfortunately due to higher risk of infection inherent to any long-distance travel, I've had to refuse their assistance. Even my parents wish to fly back to Florida but I cannot let them take that risk. So in addition to childcare help from Rebecca and KD, I've signed up with a daily housekeeping service, at least for the next month or two. They wear a mask, clean the busy areas of the house, and help a bit with dishes and laundry as needed. Additionally, I have found a new babysitter who also has experience dealing with medical issues. She will start full-time in October.

This past month has been exhausting for both Juliet and me and I don't think I've ever needed more help in my life. And yet, despite me needing help, literally everyone we know offering to help, and us being open to accepting the help, it still took a whole month of sleep-deprivation to sort it all out. I am optimistic that by October, I will have a much better routine and get plenty of rest nightly. But it's crazy how much worse this whole process was made due to the pandemic.

In the absence of COVID, my parents would have flown in immediately to take over childcare. It would also be easier for them since Naveen would have gone to school and Leela would be in daycare on weekdays. I would have focused my attention 100% on to Juliet's medical care. She still would have worn a mask everywhere due to being immunocompromised but the risk to her health would be much lower. And if my parents needed a break, we could've called any of the babysitters we've worked with in the past. Instead, we're needlessly going through everything I've written in the paragraphs above. While many young and otherwise healthy people can afford to take the risk of contracting Coronavirus, we cannot. I cannot bear to take Juliet to the ER again. I'd say I'm doing a pretty decent job holding everything together right now in spite of everything, but I simply cannot bear to take Juliet to the ER again. I just can't.

So until there is an effective vaccine, we're going to have to keep isolating, keep wearing masks in public, keep Naveen enrolled in virtual-school, keep Leela out of daycare, and keep counting our blessings.

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Days after MSWed, 19th Aug '20, 2:55 pm::

Juliet is feeling slightly better, less dizzy, no double-vision, but she is still extremely weak and needs assistance moving around. We're hoping it is the after-effect of the massive amount of steroids they pumped into her and that once those wear off, she will regain some strength. As optimistic as we remain, we are taking this very seriously and realize our lives will never be the same again. Doesn't mean life has to stop though. It will be different from what we planned, not worse.

For me, it's been a busy day. For the first time in months I had a good night's sleep. Maybe knowing that Juliet has finally been diagnosed properly made it easier to relax. The uncertainty of what was ailing her was gnawing at me for a long time. Or maybe I was just tired from a really long day yesterday. Either way, I woke up and got started with the day fresh. Had an infinite amount of chores but I think I got about half the way through, which in mathematical terms means I'm 100% done!

I was going to list all the things I did today because I'm pretty proud of myself for even getting out of bed considering everything but then I realized it would be a boringly long list. From putting away groceries to cleaning the outside freezer, from changing diapers and taking out trash to making doctor and estate lawyer appointments, I kept checking things off our todo list! I'd rather have an empty list than show off a long one.

For now, things are calm. Both Juliet and Leela are resting, Naveen is playing Terraria, I have a few meetings to attend, more than a few emails to reply to, and figure out what a manageable schedule for all of us will be for the next few weeks. Since Juliet is severely immunocompromised, we can neither get a daily babysitter (save for emergencies), nor can we have family or friends come stay with us to help out. But chores need to be done, kids need to be fed and cleaned, Juliet needs to heal, and I need to make sure I do not overexert myself and make a bigger mess of things than they already are.

So my strategy is simple — do one thing at a time. I am not a multitasker. No point in running the washing machine, cooking a meal, taking a conference call, fixing a server, and feeding the baby all at the same time. I can do one thing at a time and do it well, calmly, and without screwing up. I'm not at a place in my life when I can manage to make things worse. I prioritize my list in coordination with Juliet and Naveen and then we go down the list. Anything I can't do today, gets done tomorrow. If I have a bad day tomorrow, then I hope the day after that will be better. No point in panicking non-stop trying to do everything at once. That's been my strategy for years anyway and it has worked out well for me through thick and thin. Let's see how it works over the next few weeks.

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Tue, 18th Aug '20, 11:15 pm::

Juliet was released from the hospital this evening and is finally resting at home. She has a long road ahead and I know she will do her best with every single step. Thank you everyone for your support.

This week she will begin physical therapy and start taking additional steroids. I am going to setup a neurology new-patient appointment for her and fill out paperwork with her job. It's pretty routine stuff, nothing serious. The major events happen once the neurologist lays out a treatment plan for her and she starts the primary MS medications in a few weeks, hopefully sooner. Will keep sharing that here.

For now, we're just glad she's back home. The kids and I missed her so much.

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MSSun, 16th Aug '20, 2:55 pm::

Juliet has been in a local hospital since Friday afternoon, currently awaiting a lumbar puncture (spinal tap) to confirm the diagnosis of Multiple sclerosis (MS). I am writing this down not just to share with everyone but also to create a timeline of everything going on right now for our own sake.

Since end of July, she had been feeling dizzy, weak, fatigued, and had back and neck muscle pain. Initially we suspected it was low potassium or electrolyte imbalance so she took some supplements and felt better in a day or so. However the symptoms persisted and she got blood tests. The results showed no issues except for slightly low potassium. When symptoms didn't go away, I took her to our family doctor who prescribed her to get an MRI. Before she could schedule MRI, she started getting new symptoms that closely resemble COVID-19, like runny nose, mild fever, and sore throat. She took a coronavirus test and the infectious disease specialist she saw said it was most likely COVID because the symptoms closely matched most others affected by the virus.

She isolated from us in the master-bedroom side of the house all week and I did my best to keep myself and the kids away from her. Thursday she developed another symptom that didn't make sense - blurry vision. Later that evening she started experiencing double vision and we were definitely on high alert in case we needed to take her to ER. Instead some of her symptoms subsided and she felt a little better so we thought, let's wait for the COVID results. Friday late morning she heard back - COVID negative. That was the big red flag for us. She was experiencing double vision, fatigue, and dizziness without being COVID+. We put both the kids in the car and drove to the ER.

At ER, they immediately scheduled her for a CT scan and the doctor said he suspects MS because of her symptoms. We were hoping it was nothing but started to mentally prepare for something serious. Unfortunately due to coronavirus restrictions, I could not even enter the ER so all of my support was over the phone, as I took care of the kids at home. We got her CT scan results around 5pm on Friday - they found a small mass in her left parietal lobe (deep above the left ear). They scheduled an immediate MRI and gave her some medicine to help her relax because brain MRIs can take 40-50mins.

Around 6pm on Friday Aug 14th, she was done with the MRI and then they admitted her to a private room in the hospital for overnight observation. While we waited nervously for the MRI results, I did my best to not overthink or worry about what a mass in the brain could be. Of course our worst fears were inoperable tumors or clots but thankfully, around 10pm I heard from our family doctor that it was not a critical, urgent situation. However, it was serious with long-term consequences. He went to see her in person as soon as he received the MRI results and told us that it was most likely MS like the ER doctor suspected. He reassured Juliet that we can manage this and there are a ton of resources available for MS and the best thing we can do right now is reduce her stress levels.

Saturday morning, she was seen in the hospital by a neurologist. I had spent a few hours learning about MS the prior night so it was comforting for both of us to hear him confirm our understanding of the disease and treatment plans. He told us that upon reviewing the MRI himself, he noticed signs of prior MS flare-ups. This was troubling for us because it meant this wasn't the first time Juliet experienced neurological issues. We didn't catch it the first time it happened. But it was also validating for her because over the past few years, she has experienced some of her current symptoms with lower severity but could not identify why. We chalked it up to IVF treatments or flu but never had any idea it was a chronic neurological issue. The neurologist then suggested she get additional tests to rule out other non-MS issues and scheduled an MRI, blood test, and a lumbar puncture (LP).

As I write this, she is undergoing the LP. I started reaching out to family and friends over the past 24 hours, trying to lay down the foundations of a soon-to-be-indispensable support system for her. I learned one of her close friends from PA school, Carol, has been specializing in neurology at a major hospital here for 7 years! Coincidentally Carol's husband, Ron, helped me get in touch with the neurosurgeon who performed my spinal surgery two years ago. Many of our friends and family have already offered to baby sit for us for weeks or longer if necessary. That is more than we expected from anyone so thank you everyone!

Just got the word, she's out of the LP and resting now. Phew! Right now my focus is to keep her calm and stress-free while taking care of the kids. Once she is released from the hospital, she will be on strong immuno-suppressants, which means she cannot risk getting infected, not just from coronavirus but also any other infectious diseases. This unfortunately rules out anyone else helping us with the kids for the time being because even a minor infection can result in emergency situation. So most likely for the next few weeks, I will go at it solo as I learn more about the various medicines and treatment options available for MS.

Based on what I've read so far, there is a lot of active research in this field and a ton of new medications in the last decade that help patients. Unlike cancers, there's no "beating MS" because it's an auto-immune disease and doesn't go away. However, we hope to create a life for us where she can remain fully-functional, active in our family and social circles, while not taking on any unnecessary stress. Lifestyle changes are always tough but unavoidable when it comes to chronic illnesses. Maybe we'll finally move to a place with a dark sky so we can stargaze together!

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Happy 12th Anniversary!Mon, 27th Jul '20, 1:45 am::

Today marks twelve years since the day Juliet and I eloped to Yellowstone and got married in front of a waterfall. Last November after we brought Leela home, I was planning on a Costa Rica vacation to celebrate our anniversary but scrapped everything once I noticed the uptick in coronavirus cases around the world earlier this year. So now instead of creating new happy memories, we're just staying home and sticking to our normal family/work routine.

As much as I'd like to lament over how repetitive and mundane our life has become these past few months, honestly I'm just glad I got to spend more time with Juliet this summer. Of course it would have been great going out and celebrating all of our special days with friends and family but given that my chronic dry cough is back with a vengeance, I'm happy to be home with the love of my life without worrying about catching anything outside.

We've been cooking healthy meals, working on puzzles, exercising regularly, playing video games, and watching the kids together. No matter how bad things have gotten for us over the years, I've always been able to rely on Juliet to make me laugh, pull me out of any rut I find myself stuck in, and be open to sharing our thoughts, worries, and dreams. Not that I ever forgot but this summer made me appreciate how amazing she is and how lucky I am.

I love you Juliet!

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Isolated but not isolonelyFri, 8th May '20, 3:55 am::

Leela turns six months old today! She is healthy, smiling, and surprisingly easy to care for. Naveen is doing well, especially now that Juliet bought him a tiny indoors trampoline to jump on all day. We've been at home for 7 weeks now and keeping ourselves busy. Four days a week, we attend an online martial arts class hosted by our friends Maria & Megan at Mt. Song. Naveen's been playing Terraria on his Kindle and I've been catching up on last few years of DC superheroes shows on Netflix.

Not to say that things are all peachy. It is definitely a detriment to both the kids that they have nobody else their age to play with at this time and might not for another few months. Juliet has started getting Naveen to exchange letters with his friends. She is pretty social and outgoing herself and hasn't seen her friends in a while too so I'm sure it's been hard on her. Not much has changed for me since I barely go out to meet people in person; most of my socializing is online or on the phone so I'm the least impacted.

As to my thoughts on how the virus will further spread or die out - no idea. I've been keeping an eye on it since late December when it was just a rumor. We now know so much about it but it is still not enough. We don't know which medicines help and at what stage of the infection. We don't know if lack of Vitamin D has a material impact on severity. We don't know if most people already have it. We don't know if there will be another wave or two. We don't know if there will be a vaccine in a year or two. We don't know which country is doing is right for the long term - Sweden or Singapore.

What I do know is that we know a lot about seasonal flu. We have vaccines, procedures and protocols, and a century of painful experience and medical knowledge. And yet seasonal flu kills tens of thousands of people each year. This variant of coronavirus is new, unlike other common viruses, and as of yet, incurable. So regardless of whether it's ro factor is higher or lower than flu, there are far too many unknowns for anyone to predict months out. We can extrapolate infection case counts for a few days or week but beyond that, nobody knows. We can look at community infection rates and suggest mitigation efforts but we cannot predict how people will adhere to them. Anyone who says anything concrete is just giving their best opinion. Will it go away after everything reopens? Nobody knows. Will it caught a million deaths by end of 2020? Nobody knows.

It is common for there to be world-wide issues that affect everyone that nobody knows how to predict. That's been the standard of our experience for millennia. Nobody knew when the World Wars would end. Nobody knows when the next big earthquake, tsunami, hurricane, or volcanic eruption will be. Nobody knows what price of oil will be in three years. Our entire society is built on not knowing something but working very hard to find out. That's what we humans do. We say "I dunno but..." and then we figure it out a decade later. Our problem isn't that people don't know. Our problem is people who don't know but claim they do. It is totally ok to be cautious at this time because we really don't know. And frankly, since we don't know, it is also ok for others to have different outlook than you, provided they are based on something resembling reality.

My long term outlook of coronavirus is that we will either have a decent enough vaccine or a pretty reliable treatment procedure. Along with the seasonal flu, we will have seasonal COVID cases but they will be fewer in number. Unlike SARS, I don't think coronavirus will be contained and eliminated from general population since it has already spread so much. So it will be closer to swine flu or norovirus. Billions of people with none to mild symptoms, tens of thousands of deaths annually. If my suspicious are correct, then it won't matter if countries chose the Singapore route of "test-everyone and wear masks" or Sweden route of "keep elderly safe but everyone else keep working" except to flatten the hospitalization curve.

Right now most places have indeed flattened the curve but I think that might give people a false sense of safety. People in countries like Vietnam and New Zealand who now have close to zero cases might think their country avoided the COVID pandemic completely. But until there is a vaccine, there is no guarantee that they won't become the next hot spot after reopening their borders to tourists. Contrast that with Florida that is already reopening and most likely will have an uptick in cases over the summer. A year from now almost all Floridians will either be immune from COVID or some unfortunately dead. So in 2021 summer who will have a better tourist season? Vietnam or NZ which could be a coronavirus zone or Florida which already went through the worst?

These are just opinions, like everyone else. Nobody knows and so all I can say is stay safe, stay healthy, and try not to lick handrails!

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Love in the Time of CoronaMon, 23rd Mar '20, 1:45 am::

Last week, we went to court to attend the final adoption hearing for our baby girl Leela. Due to the numerous state-wide cancellations in light of COVID-19, it turned out to be a private, memorable event. We met with our wonderful attorney, walked into the court as a complete family, baby Leela in arms, Naveen rocking a Super-Brother cape, and met the judge who heard our case. It was a brief 5-minute affair and at the end of it, the judge declared that Leela is now recognized by the State of Florida to be a part of our family in every single way that Naveen is. My parents were there with us to share the culmination of what I can only describe as a four-year journey towards becoming the family that Juliet and I dreamed of, so many years ago.

A couple of days after the court date, my parents were on the flight back to India, just in time before India imposed travel restrictions. This past Thursday I found myself alone at home with the two kids, looking up virtual museum tours. Juliet's been home last couple of days and I finally got some time to catch up on my projects.

Originally I had planned on taking the kids to museums, libraries, and nature parks every day after my parents left for India but now, I'm just staying home with the kids until the situation changes. I do worry about Juliet since she works in ENT/surgery and they're running out of protective gear at the hospital. But honestly, I am more proud of her than worried because right now, the world needs people like her to keep going into work and taking care of everyone.

Before kids, I always remarked that while I spend my days making things green and red in Excel, she's out there performing live-saving surgeries. Now I could say that while I spend my days playing lego and cuddling babies, she's out there fighting a global pandemic. 2020 has been an interesting year.

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Sun, 8th Mar '20, 7:35 am::

Leela turns four months old today! She's doing great and babbling a lot more now. She smiles, grasps objects, and sleeps soundly through the night. She's even doing something called bubbling, which Juliet says is a milestone. My parents have been here for two months, helping take care of both the kids. They're planning on going back to India in less than a month. Once they leave, I plan to be with the kids on weekdays and resume our daily museum and library outings.

Unless, of course, everything shuts down due to coronavirus. We're not panicking but we are being cautious. Best Floridian analogy I can think of is a hurricane that's already ravaged the Caribbean is slowly heading north. Maybe it misses us and fizzles out of the gulf or it's hunker down time. Only time will tell but best to keep our eyes and ears open (but not touch them without washing hands).

In preparation of my new home daycare routine, I've setup a computer desk with my dad's help, where I can work and watch the kids safely. A decade ago I had a desk with 5 vertical monitors, with a combined resolution of 5250×1680 pixels. My new system has three 4k monitors at 3840×2160 each which is nearly three times the pixels. The real difference is the computer needed to power it. Back in 2010, I had a beast of a PC with three graphics cards powering the five screens. Now I have a tiny Mac Mini mounted under my desk, completely invisible from the view. Additionally, all the cables are now neatly tucked away and I can adjust the desk's height as needed. I'm still waiting for some more parts but once it is all done, I will share some pictures.

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Fri, 7th Feb '20, 12:25 am::

A couple of hours ago as we were all getting ready for bed, all of our phones started buzzing with a National Weather Service Tornado Warning. We took the kids and rushed into an indoors bathroom and stayed there from 10:40pm until 11:05pm, wondering how far the tornado was. I was able to view our outdoors cameras on my phone and the rain was coming down heavy. We could hear the wind pick up speed around 10:45pm. Thankfully for us, everything quieted down by 10:55pm and a quick backyard inspection showed no trees down. I'll have to do a thorough walk-through tomorrow and make sure no roof tiles were damaged. We're 4 months away from the hurricane season in Florida but the unexpected alert from a winter thunderstorm felt no less severe.

I heard on the news that there were people injured from downed trees a few miles away from us. Coincidentally just earlier today I messaged my lawn guy to trim down some branches that are starting to hunch near our garage. Such is life in evergreen Florida.

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Our daughter LeelaMon, 2nd Dec '19, 3:25 pm::

I waited until we got home to announce this because I still cannot believe it really, actually, finally happened! Early morning on November 8th, we got a call from our adoption attorney saying we needed to fly to Arizona immediately because our daughter was going to be born soon! Within an hour I booked the flights, hotel, and rental car while Juliet and Naveen packed up everything. Just as we were locking up the house, we got the word that our daughter Leela was born! We flew to Arizona a couple of hours later and got to hold her the same night! I don't think there are enough exclamation points in the world to describe how we felt looking at her tiny little face and hands and feet!!!

Leela doesn't know it yet but we had been waiting for her for a long, long time. And she is everything we could have asked for. The adoption process has not been easy but holding her for the first time made the years of trials and tribulations worth it. Naveen has been very helpful throughout the process, repeatedly asking us how he can help with the baby chores.

We had a wonderful Thanksgiving Day with lots of food, thanks to Juliet's bestie Rebecca who cooked up a delicious dinner for us while we were on the flight back from Arizona. Juliet is taking some time off from work, my parents are going to come stay with us soon, and the holidays are coming up. Leela is going to be loved and coddled beyond belief :)

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