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November 2, 2020 / JustinKays Porter

One Year

On our trip to LA a few weeks ago, the study coordinator reminded me that we had just reached a big milestone. This week was Millie’s one year anniversary of being in the study and receiving treatments. After getting this reminder, I immediately started ugly crying in the hospital, much to the dismay and confusion of the staff there. They didn’t understand why something like that could be so upsetting. Shouldn’t I be happy? We were doing all we could for Millie; I should be proud.

Their reaction made me equally confused. How could this be exciting? When we’ve lost so much in the last few months? Proud? Excited? I’m terrified. I’m exhausted. I don’t know what to do, how to feel, where to place my hopes.

And then it hit me: these kind people don’t know my Millie. They don’t know the little girl who cruised around our Chicago apartment with her walker looking for chocolate covered raisins. The girl who giggled uncontrollably when her dog chased bubbles. The girl who had chubby cheeks and a little belly from eating m&m pancakes and peanut butter and avocado sandwiches and too many donuts. The girl who would help me read books and tell stories, who would ask to hear Van sing songs, who would spend hours in her tower watching me navigate our increasingly complicated life. The girl who loved to play with her babies, and make food in her play kitchen, and cook on the barbeque in her house. These people don’t know her. But I do. And I miss her every minute of every day.

The last few months have been hard. As much as we keep hoping and trying new things, Millie is not getting any better. And it feels like a little more of my girl slips away from me everyday. I still catch glimpses of her, but the smiles are harder to come by. And the smiles are really all we have. To be honest, I don’t know where to go from here, or what to do. I’m just trying to love her as best I can and be whatever she needs me to be. But I can’t help but remember and miss that little girl; I would give just about anything to hear her say my name, or give me a hug, or hold my hand.

I believe in miracles. But through this journey, I’m beginning to see that miracles come in all shapes and sizes. And as much as I want a big miracle for us, maybe it’s not in the cards. Maybe our miracle was having some extra good time with Millie, to watch her grow and shine and be her beautiful self for a few extra months. And…

This post has sat like this as a draft for a few weeks. I didn’t know what to say next. There’s more. So much more. More to be said, more to be felt. But right now, this is all I have. I can’t do “more” right now.

So I’ll end with this. My sweet cousin made us “miracle Millie” bracelets, and I would like to share then with anyone who will wear them (I have lots, don’t worry!). Wear the bracelet on your wrist, and hold my family in your heart. Send me a text or email or leave a note on the comments and I’ll get them to you. We have regular and youth sizes, but some adults (myself included) may like the youth size better.

And then this set in my drafts for another week or two. It felt unfinished. And today I realized what else I needed to say to you all.

First, thank you, for your love, support, prayers, check ins, positivity. For all of it. If love and happy thoughts were enough, Millie wouldn’t have a care in the world. I know you all care about us and the journey we are on, and I’m sorry it’s taken me so long to post an update. I struggle to share news that isn’t good, but it’s time.

Second, this post sounds very dramatic. Reading and rereading it makes me wonder whether or not I should post it. But here it goes. I guess I just want to say that there are still good things happening. We get smiles, we have easier days. We recently figured out how to get Millie back in a bike seat and she still loves it. There are happy moments and that’s what I need to remember.

And one more thing… I’ve suspended all my social media accounts in the hopes of improving my mental health a bit. So if you reach out on those platforms, I’m not ignoring you. Keep the love and positive vibes coming our way. Our fight is far from over ❤️

August 1, 2020 / JustinKays Porter

HOME

WE’RE COMING HOME!

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This is equal parts exciting and terrifying to me. I’ll explain why in a minute; but if this post is extra emotional, just know that I currently have all the emotions. All the feelings. All the things. It’s been a very busy, stressful month working out all the details. I’m finally confident that it’s all happening. It helps that we finally got our one-way plane tickets today; we’re moving back to California in less than two weeks!

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We’ve had a rough go of things the last few months, as have so many others. Our troubles are probably a little different than most, but it’s no surprise that I think we’re all still struggling. I mean we’re fine, right? Right. We’re fine. Sure we are.

Alright, here’s the story. We flew home to California in June for a much needed break and time with family (Yes, I packed up my kids and put them on an airplane during a pandemic. More than once. It’s fine, you can judge me.). A few days before our flight from Chicago to San Jose, our study coordinator informed us that UCLA had just opened as an injection site. And we should change our round trip tickets to one way tickets and just move home. In three days. Oh, you just signed a year lease? Oh, you have a life in Chicago? Oh, you need some time to wrap everything up before you can move? Oh, you’re not looking forward to moving AGAIN? For the third time in less than a year? Well, too bad. “They” have spoken. And “they” are pulling the plug on financial assistance for rent.

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If you know me, you know that my reaction to this was probably “WTF. NO.” I mean yes, take me home. But move in three days?! No. Even if by some miracle I could have made that happen (while Justin worked and I watched a newly VERY mobile one year old and a three year old who needs A LOT of help), we locked ourselves into a year lease in April. Because in April, we were told a California site was likely 9-12 months from opening. So…  ya. NO.

After a lot of emails, letters, phone calls, and so many new gray hairs, we reached a compromise. The sponsor would pay our rent until we could find someone to move into our apartment. And thank goodness our landlord was okay with this situation. And thank goodness we were able to find someone to take over our lease relatively quickly. Throw in scheduling movers, packing, selling, giving away, cleaning, parenting, and living… it’s been a wild few months. But it’s all coming together.

Writing this post, jumping through these hoops, spending so many hours arguing, discussing, scheduling this move; it all really has me thinking about home. Home means something different to everyone. Home is where the heart is. Home is wherever I’m with you. Home is a feeling, not a place. But you know what? To me, home is where my people are. While we’ve built a life in Chicago with so many wonderful people, it’s never felt like home. And given more time, I’m sure that I would get to a point where I had people in Chicago. But the vast majority of our people are in California. And even if I can’t see you and hug you (damn you, coronavirus!), I want to be near you. I need that strength in numbers that only home can provide.

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Now that I’ve told you my latest story and shared arguably too many of my emotions, I’ll give you a little day-to-day update. Millie has been on a scary downward spiral until a few weeks ago, but I think we might be on an upswing. We have a looooooong way to go, but I’m feeling a lot less hopeless. A few weeks ago we were getting very few smiles, Millie wasn’t eating or drinking, and struggled to even sit up on her own. But she seems to have rediscovered her appetite, is sitting up nice and tall unassisted, and is smiling more and more. It’s going to be a long road, but Justin and I really feel that being home and around our support system (again with the people!) will also really help. She is very very very excited to be going back to “Flo’s home” full time. As are we all!

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Nate is a wild animal. No really, he’s everywhere. All the time. He is so happy and so full of awe at the world. A new sound makes him giggle hysterically. He loves to watch the waves, but has finally figured out if he doesn’t walk toward the water we pretty much let him wander. Birds, flowers, dogs, sticks, clouds… he’s fascinated by all things outside. His favorite pastime inside? Banging on the door to go outside. Yes, I’m serious. I can’t wait for him to have a yard!

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We walk or bike to Lake Michigan multiple times a day. It’s no Pacific Ocean, but it’s beautiful. And I can walk there. And I will sorely miss that… the walking and biking trails near our apartment are wonderful. We have picnic dinners with the kids at the lake most nights. We go to the harbor and watch the sailing classes go in and out of the harbor in their tiny boats, chasing tennis balls. We watch the yachts come and go with their giant wakes; the swimmers and sun bathers yelling that they are too close to shore. We bike to the northern-most end of the lakeshore trail and eat donuts on the beach. You better believe we are taking full advantage of our proximity to the lake.

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The future is pretty hazy right now. Weekly flights to LA. New doctors. New routines. New, new, new. It’s going to take awhile to hit our stride. But we’ll get there. And we’ll have our people to help us.

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June 17, 2020 / JustinKays Porter

We’re Fine, Continued

Hello again. I wish I had better news to report, but all I can really say right now is that we’re still fine. I think COVID has wreaked more havoc on our lives that I thought possible, but we’re still chugging along. Millie has continued to receive her weekly treatments, and we are so lucky in that respect. But missing 12+ weeks of physical therapy seems to have undone all (or at least most) of the progress we’ve made since we moved to Chicago.

It really breaks my heart to even write that, but it’s true. And it’s about time I admit it. In March, Millie spent most of her time standing to play, would cruise around with her walker, could get herself out of bed, and would spend quite a bit of time playing on the floor laying on her belly and rolling around. These are all skills that she has (hopefully only temporarily) lost. For the last month, maybe more, she has only wanted to sit down in a supported position. The things she used to do happily or unhappily (but she would still do!) seem unreachable right now. It’s frustrating. It’s infuriating. It makes me want to hurt whatever asshole decided that physical therapy for toddlers wasn’t an “essential need.” The worst part is, we and her doctors think most of her unwillingness to do things is based in fear, not inability. But because she hasn’t done these things for so long, she’s lost the coordination and the muscles. We are on a very long uphill road.

 

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However, it’s not all dark and stormy. We’re a long way from sunshine and rainbows, but there are definitely blue skies ahead. There have to be. And now that the longest weather metaphor is over, I’ll hit some of the highlights. Millie gets excited about things. For awhile, she seemed so wrapped up in her own head and terrified of everything, that she wouldn’t have much emotion at all. Now, she makes the most adorable sound when she’s excited… it just warms my heart. That sound goes right to my soul every time, and it’s what tells me we’re still on the right track. What gets her excited? Walks (we bought a new stroller, that I’ve dubbed the “chariot”, and she wants to be outside, cruising through the park or along the lake front all day every day.) Brownies. Basket rides (in an empty laundry basket). Countdown chains. Talking to Flo and Lola on FaceTime. Bike rides. Going to our “other home.” Legos. Reading books. Picnics in the park.

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Summer in Chicago has finally arrived, and it really is as beautiful as they say. The city is so green, the lake is so blue, the weather is wonderful, and our apartment is such a short walk from so many gorgeous places. That are finally starting to “officially” open. Although many of them have been unofficially open for weeks, and we’ve been taking full advantage. The beautiful places to go and the weather have improved all of our moods, to say the least.

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We also (finally) started up with physical therapy again last week, and I can already tell a difference. Having anyone other than mom and dad ask you to do something makes it so much more palatable; something I never really understood until now. All you parents reading, you know exactly what I mean! We’ve been able to get Millie back in her tower for brief stints, doing some stand-ups from a sitting positions. We’re just trying to do everything we can to get her confidence up, and maybe build a little muscle along the way.

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In other news, Nate is walking! I would say as of today he spends about half his time walking and half crawling, but he is very quickly ramping up the walking. He also loves to be outside and does NOT like to come inside. Ever. Which is rather difficult, as we don’t really have any outdoor space at our apartment. So back to the stroller and the park we go! Nate babbles, he giggles, he listens, and when Millie makes her excited sound, he loses it with a huge grin and big belly laughs. Anytime I can get that combination, it makes such a bright spot in my day. And those little bright spots are what I need!

I think that’s all for now. We’ll keep on keeping on, and I’m sure you will too. xo

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April 19, 2020 / JustinKays Porter

We’re Fine

It’s been awhile. A LOT has happened in the world since I’ve last checked in. So let me start by saying we’re fine. We’re healthy, we’re safe, we’re fine.

The clinical trial we are involved in is considered “life-saving” (they’ve progressed beyond “essential” at this point), so we are fortunately continuing to receive weekly treatments. Our Monday trips are looking a little different; the children’s hospital is very empty. There are check points at every entrance with manned hand-sanitizer stations and masks are handed out to everyone. Sanitizer and masks are no longer optional, but required. The research unit has cut back drastically on how many people we come in contact with each visit. The study is paying for a car service to pick us up, wait at the hospital, and take us home. Our driver shows us the cleaning paperwork every week. Getting in the car is quite the circus as we aren’t supposed to touch the door handles. So precautions are definitely being taken!

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We get smiles at the hospital now. Life is good!

In other news, we moved on April 1. We are loving our new apartment; it’s quite a bit bigger and on a very quiet one way street (our last place was on the corner of a busy intersection and it was loud! and bright!).

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Saying goodbye to our old house and saying hello to our new purple door house

We have been going out for walks when it’s not snowing or raining and getting to know the neighborhood. Most things are closed, but it’s fun to window shop. We are just a few short blocks from the lake and Lincoln Park. While we can’t actually enjoy these right now, we can stand across the street and look at all the green. Spring is arriving in Chicago by degrees; we see more greenery and new flowers every day.

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We all had our knees out the one day it was over 60 degrees. It was beautiful! And then they closed the parks…

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A short walk to the foggy North Pond in Lincoln Park (also before the parks closed)

Millie has struggled a little with the move. I think we’re getting back to a good place though. We have taught her how to get out of bed by herself (!!!) and it has been a huge game changer. For a kid who doesn’t crawl and can’t go from laying to sitting, getting out of bed required some creativity. But we’ve raised her bed (it was on the floor), and now she can “wiggle down” and slide off the end of the bed to a standing position. We leave her walker parked nearby and she comes out of her room when she is ready. If you know Millie, you know that waking up in the morning and from naps have been the hardest parts of our days for as long as I can remember. And now she comes out of her room sooo proud of herself and so much happier. It’s amazing how something new becomes normal… I’m not sure I realized how big of an impact this skill is having on all of our lives until I wrote it down.

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Nate is on.the.move. He crawls at lightning speed, pulls himself up on everything, cruises on furniture, and will literally use anything he can push as a walker. It’s not uncommon for him to push all four dining room table chairs to various places around the apartment. He is a pro with Millie’s walker and is finally learning that he can’t use it when she is. He’s starting to listen and learn and it’s so fun to watch. This movement phase is something Millie never really got to, so it’s new for me! And it’s so great to watch them play together; they stand at the coffee table and play with legos. Together! They lay on the floor and read books. Together! (Well, kind of… Nate just yells at the book and Millie turns the pages. But there is generally no crying involved).

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Now let’s get back to being “fine” and the state of things in Chicago. Chicago has closed ALL public indoor and outdoor spaces. The lakefront trail (more than 20 miles of pedestrian and biking trails), the river walk, Lincoln Park, Millennium Park, Grant Park… everything. Not to mention, most people who live close enough to enjoy those features live in small apartments with little to no outdoor living space. The mayor of Chicago posted on Instagram today that if the nicer weather is inspiring you to get outside for fresh air, “open a window.” Chicagoans are expected to stay inside. All the time. No matter what. In our small apartments. And open the windows.

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I understand the need for social distancing. I understand the need to wear a mask and wash your hands. I understand how important this is. I do. BUT NO ONE IS TALKING ABOUT MENTAL HEALTH. Yes, that deserves all caps. Getting outside, getting fresh air (not through windows!!), getting exercise, getting a dose of vitamin D are all things that make you feel good. They are good for your body, mind, and soul. And they can all be done wearing a mask while safely social distancing. It’s absurd to me that all the open space in the city is closed, forcing people onto sidewalks where they congregate (unintentionally) at intersections waiting for walk signals. And no one is talking about it. Well, except me. Apparently I’m still ranting and raving about it.

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But in all seriousness, how are we supposed to stay sane when we are stuck inside and completely isolated from friends and family? Not to mention work from home, school from home, entertain our kids from home, worry about friends and family from home? And do all this from a city that still doesn’t feel like home. Like I said, we’re fine. 2020 is not proving to be the thriving year I had hoped for, but we’re fine. The new normal we quite literally just settled into has been thrown for a loop, but we’re fine. We’ve had to cancel two trips home (and who knows how many more), but we’re fine. I’m lonely and scared and sad about the state of the world and tired on a whole new level, but I’m fine.

This is not a pity party (well, maybe just a little). This is more of a message to everyone that it’s okay to just be fine right now. If you’re struggling, please know that you aren’t alone. I’m struggling. A lot. But it’s temporary. This will end. And we have so many wonderful ways to keep in touch right now. If you’re struggling, reach out to your people. If you don’t think you have people to reach out to, I am your people. Call me. You’ll probably hear at least one screaming and/or crying child in the background, or the police sirens driving through the parks to keep people out, or the birds chirping out the open window, or Justin on a work conference call, or Millie attempting to do some preschool activity while Nate tries to tackle her, or Nate trying to steal Millie’s walker to take it for a spin; but call me. It could be entertaining, right?!

PS: If you really are fine and you think I’m crazy for writing all this, call your people. I guarantee you know someone who feels the way I do, and they need you right now. Ok, mental health PSA is now over. xo

PPS: Sorry if this was TMI. To make up for it, I’ll leave you with this:

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February 29, 2020 / JustinKays Porter

A New Normal

The fact that I haven’t written in almost two months says something very important about our life: we’ve reached a new normal. We are falling into new routines and new habits in Chicago, to the point where they don’t feel new anymore. And it’s good. It feels so good to have things that don’t feel new. I am a creature of habit, maybe more so than most, and I like that my life is back to having more elements of habit than newness.

Having said all that, we do have some news to share, both good and not-so-good (but don’t worry, no bad news). Millie’s treatments are continuing as normal as can be. We actually had a big milestone this week: we’ve been slowing weaning Millie off her pre-meds over the last month or so. This week was her first injection without any pre-meds and she didn’t have a reaction! I was a nervous wreck, but she did just fine like the tough little cookie she is. (Quick refresher: Millie had what amounts to a not uncommon allergic reaction to the injection back in October. Since then, she’s gotten an IV with anti-nausea meds, steroids, and Benadryl every week before the injection. It was quite the cocktail for her little body and it made injection days about twice as long as they would otherwise be). Needless to say, we are SO RELIEVED that things went well today. Because no one was sure if she would react, they still put in an IV before the injection as a precaution. Unless something unexpected happens (and it could), next week will be the first week in over four months that Millie won’t need an IV. This is HUGE!

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PT is helping Millie gain more confidence. She gets around well with her walker, but needs a lot of prompting to take steps on her own. She got a new set of braces a few weeks ago that seem to be good for her and we think they will help push her in the right direction. I’ve also (finally) gotten good at carving time out of every.single.day to do one on one PT activities and I’m getting better at making them fun. All things that will help in the long run, and it will be a long run for us. But we only have to take one day at a time and I’m also (finally) getting better at that. It’s been a big mental shift for me to try to stay in the moment (Or at least the hour. Or sometimes just the day…).

One of the more fun things happening in our lives is that Millie is talking up a storm. I was a little worried about a speech delay, but her pediatrician in Chicago advised that we wait until she’s 3 before we worry about it too much. With how much she’s been through in the last six months, it’s expected for the added stress to cause delays. I’m happy to report that everyday she’s coming up with new sounds, new words, more syllables and words together… she’s like a parrot! A really cute parrot, that is.

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Nate is growing by leaps and bounds. He doesn’t do a traditional crawl, but he does the worm VERY well and gets into anything and everything. Thank goodness for doors and baby gates… He seems far more interested in pulling himself up and learning to stand than in crawling. He has become quite the little yogi, with moves I can only hope for in my wildest yoga dreams. Our floor is constantly strewn with food because Nate will only eat things that he feeds himself. He thoroughly enjoys throwing food overboard and when he does decide to eat, he only gets about a third of the food in his mouth. I can’t tell you the number of times I call for Flo to help me clean things up around here.

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Now for the not-so-good news. We have known since we came to Chicago that our doctors at Stanford were working behind the scenes to try to get Stanford involved with the study somehow to bring us home. We’ve been pestering our study coordinator in Chicago for updates on how this is progressing, and we heard that Stanford was moving forward and might be up and running as an injection site within a few short months. This was very surprising (and definitely too good to be true, in hindsight) and we, unfortunately, let ourselves getting very excited about the possibility of coming home. One week after getting this news, we were told that Stanford had pulled out of the study entirely. We were confused, angry, devastated… it would have been much easier to receive this information without the hopeful news the week before.

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While we still aren’t quite sure where the wires got crossed, Stanford becoming an injection site in a matter of months was never realistic. After many long conversations with our doctors at Stanford and the staff in Chicago, it looks like we will be staying in the Windy City for awhile. Stanford has pulled out of the study for now, but we are hopeful that there will be opportunities for us to come home in the future. A lot of things are in the works, and we are just going to ride it out and see what happens (See how I did that? Staying in the moment!).

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And because we don’t have enough going on, we had to find a new place to live. Our lease ends March 31 and the owners are planning to sell. While they graciously offered for us to stay on month to month while it’s on the market, the thought of having people constantly in our space while coordinating around the naps and early bedtimes of two kids and Justin’s work from home schedule… ya. No. No thank you. So we’re moving! Knowing that we’ll be here for a while actually made this easier. We just signed a lease for a duplex in Lakeview East; we’ll be walking distance from the lake with a whole new area to explore! While the move itself is daunting, we think the new place will be a better fit for us and we’re excited.

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So that’s what’s up. We also spent a wonderful week in Florida, have hosted more visitors, and spent a sunny week in California. Knowing that we’ll be in Chicago longer term, we’re actually planning to come back to California more often, probably every 4-5 weeks. We’ll be wracking up frequent flier miles and our kids will be traveling professionals. I hope you’re all doing well, I’ll try not to be silent for so long before my next update!

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December 31, 2019 / JustinKays Porter

2019

I’ve intended to write this post for a few weeks. I couldn’t get my act together to send out Christmas cards, or write a Christmas related post, so this is my last ditch effort for a post in 2019. I want to write something that sums up what this year has meant to us, but I’m not sure how to put that into words. I’m currently sitting in a hospital room, watching my 2.5 year old daughter nap after another IV, another injection, another traumatic morning, another round of thoughts that no one should have to go through this. Seems like as good a time as any to try to get my thoughts down on paper (e-paper?).
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Five words to describe this year? Wonderful. Devastating. Traumatic. Exhausting. Hopeful. While I try my best to keep the first and last words at the forefront of my mind, I slip up. Despite my better intentions, sometimes I dwell on those scarier, less pleasant words. And that’s ok. This year has shown me the highest highs and the lowest lows and everything in between, but it has also shown me how strong my family is. How much love and hope there is in the world. How life doesn’t have to be all sunshine and rainbows to be beautiful.
We started the year pregnant with a baby boy on the way and a little girl who couldn’t walk but otherwise seemed fine. We’re closing out the year with a seven month old tank of a babe on the verge of crawling and a 2.5 year old receiving intensive experimental medical treatment that is working, for a condition that would have been considered untreatable just a year ago. Maybe the best word to describe this year is “journey”? Because what a journey it’s been.
My mind divides the year into a few distinct periods: blissful ignorance, doctors and specialists pre-diagnosis, Nate, diagnosis and dark days, and Chicago. The year started off uneventfully. I was pregnant and getting very large very quickly. Millie was doing great in all aspects except gross motor skills but no one (including me) was very worried about it. I’d hear stories frequently about late walkers and figured that was our girl. She would move when she was ready.
Then she got a cold, on a trip with my family to Kentucky and North Carolina. When she recovered, some interesting things were happening with her eyes that we decided to have checked out. That trip, that cold, that weird eye cross and twitch, started us on the path to here. With every doctor appointment, every new referral, every person that said my gut tells me something is going on here, I got more nervous. More afraid that either something was wrong with my girl or that we were on a wild goose chase for nothing and she would be terrified of doctors for the rest of her life (true story…). It helped that I was 7, 8, 9+ months pregnant during this phase. Baby boy gave my mind something else to worry about because I had to control over what was happening to Millie, but doctors and nurses and schedulers saw us and said, “Oh… Let’s see if we can get you in sooner. Before that next one arrives!”
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And arrive he did. Baby Nate, what a joy. While unborn baby Nate gave my mind something to cling to during all the unknowns of the spring, the unknowns also kept me from dwelling on the coming labor, newborn haze, and helping Millie transition to being a big sister. All of which went remarkably well. Nate was born in the late hours of May 23, a cold rainy day, to an unmedicated mama and a very supportive daddy. The labor wasn’t short, but the final stage happened so fast no one was quite ready. I take that back: Nate was clearly ready! He almost literally flew out, with the cord around his neck and a quick (but unnecessary) and slightly panicked visit from the NICU team to clear him as just fine. That’s a story for another time! Nate’s newborn days passed in a cuddly sleep deprived haze, as most newborn days do. Summer weekend trips and two happy kids almost let me forget about impending doctor appointments.
A few weeks after Nate was born, Millie had that fateful MRI and panic set in for me. The weeks of waiting for additional tests and a diagnosis were long. And then I got the call. I’ll never forget it. I was getting in the car after getting a haircut on a Friday afternoon. Our geneticist at Stanford called and said she had news to share. Could we come up to Stanford that evening? The building would be closed but our neurologist and geneticist could meet us. And clearly wanted to. Describing what happened next is beyond words. Arriving at a dark, empty doctors office. Meeting with two doctors that had tears in their eyes before they even spoke. Knowing the worst was happening, but not knowing what that meant.
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I couldn’t function. At 32 I quite literally couldn’t be alone, much less alone with my kids; it was all so much more than I could handle. My parents moved back to their house in San Jose to spend most days with me just to make sure we all made it through the mundane. I’m actually crying right now, remembering those days.
And then Chicago. We found out about the study and started the process of getting Millie involved. While it was a whole new kind of stress and worry, at least we had something to DO. I’m a doer; I think that was one of the hardest things about those first weeks. “This is happening to your daughter. All you can do is watch and try to keep her comfortable.” And then… CHICAGO.
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Through all the appointments, surgeries, injections, unknowns, and traumas, we’ve been together. I have a letter board back in Campbell that says “Together is my favorite place to be.” And that is even more true now that when I wrote it so many months ago. I can honestly say that things are going better than we had any right to think they would. Is this what I thought my life would look like right no? Hell no. But we don’t get to chose what life gives us. All we can do is make the best of it.
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Our life in Chicago is wonderful. Different, but wonderful. We’re so far from the life we built in Campbell, but we’re getting so much here. Not even including the amazing things Chicago has done for Millie; obviously there are those things. That’s why we’re here. But we’ve also gotten to know and deeply love our family in and around Chicago. We go on dates. We have an awesome babysitter who comes once a week. Once a week!!! Justin and I have been on more dates in Chicago than we have in the last few years at home. Justin works from home here, which equates to so much more time. We don’t have a car and walk everywhere (usually timing our outings with the weather!). We’ve gotten really good at getting kids, carseats, and strollers in and out of Ubers. These are all things I never thought I would say. And yet here we are!
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BUT. But I miss my dog. I miss my family. I miss my backyard and the ocean and the mountains. I know we’re doing the right thing and it’s so awesome that we have the chance to save a life… BUT. Injection days are brutal. Exam days are even harder. It’s a lot, for all of us.
I truly believe that some phases of life you just have to survive; muscle your way through it and hope for better on the other side. Sometimes you make it out better and stronger, but sometimes you just make it. That was 2019 for us. And survive we did. But you know what I want for 2020? To THRIVE.
I may not have gotten Christmas cards out this year but I got (and loved!) all of yours. All your cards, gifts, love, prayers, and happy thoughts. Our picture may not be on your fridge, but I know you carry us in your hearts. I feel it, and I thank each of you for it.
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December 16, 2019 / JustinKays Porter

These boots were made for walking!

Since our last post, we’ve had three more injections without issue. Millie is still getting her pre-meds via IV before the injection, but we haven’t had any more adverse reactions. Which is awesome! We are anxiously awaiting the day we can ditch the IV and the pre-meds altogether, but at this point we are thrilled to have the reactions under control.

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In other news, Millie has a new walker, new orthotic braces, and new boots to wear with her braces. Justin and I were very unsure of how she would respond to all her new gear, but she is doing SO WELL. This is really the first time in her life that she can get around completely on her own and we are all loving her freedom. Except maybe Nate… but at least she hasn’t run him over yet!

Here is a video of her at the library and another of her talking about her walker.

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A little backstory for the walker, braces, and boots: a symptom of MLD is a tightening of the joints. It starts with the ankles, then moves up to the knees, then hips, etc. I’m not really sure how or why this happens (and I should probably educate myself!), but the tightening has really only affected Millies ankles at this point. But having tight ankles also causes her to over-extend her knees and this contributes to her wonky walking. The braces force her ankles into a position that force her knees to be bent slightly at all times. We are working up to wearing them full time, but we’re taking it slow to make sure she doesn’t get too sore. So far she has been very accepting of them and we can see a huge difference in her posture and her stability. Finding a pair of shoes to fit with these braces was definitely a challenge… but some genius people designed boots specifically for this and they are actually cute! Not that that really matters, but you know what? It sure doesn’t hurt! The boots lace up but also have zippers that extend all the way around the toe so getting them on and off is super easy.

I don’t think I can really explain the joy we are finding in Millie’s newfound independence. She takes her walker from room to room, to different play areas, into the kitchen or the bathroom, to Justin’s office (which is in our bedroom) to say hi… we set up scavenger hunts for her to find snacks and treats and toys. It is nothing short of amazing, and her excitement is contagious.

In terms of other life updates, my sister Chels visited us for a few days at the end of November. It was a quick trip on her way to a work conference, but it was so good to see her. When we’re in California, Chels visits us two or three times a week and we’ve definitely been missing her here!

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We also spent a week back home. Justin went to work everyday, and the kids and I spent most of our time cuddling with Flo and just enjoying our “other home”, as Millie calls it (our place in Chicago is our “new home”). We saw so many people I love in such a short time that I came back to Chicago feeling equal parts rejuvenated and so so so homesick. I just want to watch this video on repeat. I’m choosing to dwell on the rejuvenated feeling and run with it; I kind of feel like I’m starting a new leg of the journey. We’re settled in Chicago and we were able to quickly settle back into to our home and our life in Campbell. Time to embrace the “two homes” and fully appreciate each one for what it is.

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And this happy little dude is six months old already (and really, almost seven!). His personality is really starting to shine and his favorite things are Millie and giggling. And when we were back in Campbell, rolling around after Flo. Also the occasional dinosaur shriek!

Later this week Justin and I are going on a date to go ice skating (!!) and check out all the Christmas lights downtown. It sounded lovely and romantic until I checked the weather and realized it will only be about 15 degrees. And then I remembered I haven’t been ice skating since I was about ten and I am a hopeless spaz… but Justin promised to tow me around if I can’t figure it out. Wish us (and by us, I really mean me) luck!

 

November 26, 2019 / JustinKays Porter

Doctors are Smart (duh…)

The title of this post should not come as a surprise to anyone. Doctors are smart. Especially when it comes to medicine. Especially, especially when it comes to their chosen area of expertise in medicine. So I should probably listen to the doctors, shouldn’t I? Yes, you may all nod in enthusiastic agreement. Very good.

Last time we checked in we had some really great news (steps! Eating! Happy days!) and some less than ideal news (a pretty nasty reaction to the last two injections). After the first reaction, the doctors wanted to jump straight into an IV with some pretty intense pre meds. I, however, thought maybe the reaction was a fluke and was very hesitant to sign up for weekly IVs and steroids. After the first reaction, we decided to try a less invasive pre med schedule (with the doctors ok). But, to my disappointment, the liquid Benadryl wasn’t enough to keep the reaction at bay. This is where we left off; two bad reactions and a new plan.

Well I should have just listened to the doctors in the first place. The next week we went in, Millie got set up with the IV and a dose of Benadryl (antihistamine to block the reaction) and Prednisone (steroid to prep her body to accept the enzyme) and had no reaction. Yaay!! They kept us for observation for a little longer than normal, but Justin and Millie made it home in time for lunch. The injection last week was the same: Millie had the pre meds and no reaction and we made it home for lunch! And now I’m writing this post from the hospital, with my sweet girl napping.

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Lurie Children’s, where we go on dates every Monday.

So all is well in Chicago. We’ve had some decidedly wintry weather (highs in the teens) and some abnormally warm weather (highs in the 40s). Justin and I are both surprised at how little the temperature changes throughout the day here; at home, a 20-30 degree temperature change in a day is normal. Here, a 5 degree change is normal. We’ve been getting outside most days and will continue to do so until the real winter weather sets in!

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We’ve had some wonderful visitors. Nancy and Dirk spent a few days with us and Nancy rounded her stay out to a week.

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Grancy and Papa Dirk visit Chicago

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5 months with this handsome little chunk!

Mike joined us for a week while Justin flew home for work.

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We’ve been exploring our neighborhood on foot a lot (two kids, no car, and a great neighborhood make it easy to stay close to home!). We got brave and took both kids on the L for an adventure to Millennium Park. And an adventure it was!

Millie has also started with her new physical therapy and we are very excited. The facility is amazing and we can’t wait to get her into some new routines with new things to work on. At home, she’s continuing to take steps and explore the new things her body can do. Lots of squats, playing on her tip toes, rolling around and crawling on the floor; all things that make us excited for what is to come.

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Millie and Nate are both smiley, giggly kids that love to eat. They are both changing so much and it is so fun to watch them grow and learn and become themselves (if that makes sense?). We definitely have good days and bad days, but the good days outnumber the bad by a long shot!

With everything we have going on in our lives right now, I just want to take a step back and be grateful. Thanksgiving has always been my favorite holiday, and I feel like I have so much more to be thankful for this year. So much more than I ever thought possible. My heart is full and happy and so in love with my little family of warriors. Happy Thanksgiving, everyone! Eat your turkey, drink your Bushmill’s, and love your people ❤❤❤

And if you’re interested in some videos, here are a few links:

Millie teases Pa

Millie loves olives

These boots were made for walking!

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Nate the Dino Baby (seriously, beware of your volume level!)

November 6, 2019 / JustinKays Porter

Happy Tears

We have big things happening in Chicago this morning. And over the last few weeks, really, but what’s happening this morning has turned me into a blubbering idiot. A very happy, slightly delirious (thanks for the party at 3 am, Nate…) blubbering mama; but I thought you might all like to join me in my current emotional state?

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Millie took steps this morning. On her own, with a light hand on her back. And it was her idea. And she did it with a smile!! Ready, set, go… ***cue all the happy tears***

I know we’ve been radio silent for a few weeks, but I’ve been hesitant to share how things are going because, honestly, it seems too good to be true. So I’ve started with the biggest news and now I’ll back track to all the other things we’ve started to notice. We are cautiously very optimistic and it’s only fair to share our joy with our tribe. Because you know what? Our tribe is the best. You all continue to amaze and humble me in ways that I never expected.

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This Monday marked treatment number 4. While the injections themselves are still very rough and the after effects the last two weeks were also very rough (more on that later), the Tuesday through Sunday sections of the weeks have just gotten better and better!

The first thing we noticed was that the drooling stopped. We weren’t even really aware of how much Millie was drooling until it stopped. Followed quickly by spitting food out way less; another thing that we had just attributed to her being a picky toddler. However, kids with MLD tend to have difficulty swallowing and difficulty controlling their mouth and throat muscles as the condition progresses. Having a kid that doesn’t drool constantly and actually wants to eat has been life changing. We didn’t realize how much of an issue this was for her or for us. But as the weeks have passed Millie has drooled less, spit out food less, and now she is like a bottomless pit… girlfriend will eat anything and everything and has consumed more calories in the last two weeks that the previous two months! She’s even got a little baby belly coming in and it couldn’t be cuter.

She also seems to be getting stronger and is a lot more willing to try new things physically. Without thinking, she will now bend her knees and pick things up off the floor, something she wouldn’t have even considered a few weeks ago. Millie will stand and play for long stretches without holding onto anything, and she know stands with her knees slightly bent. She seems a lot more confident and stable in general.

Dovetailing into that, Millie just seems happier. She’s more smiley and giggly. Her legs are ticklish and she has reflexes in her legs (two things she’s never had before). She woke up this morning saying “play” in bed and couldn’t wait to come upstairs. At bed time, she sits on the end of her bed (a mattress on the floor) and stands up to give hugs and kisses with a big smile. You guys, I’m so overwhelmed. The list goes on; I’ve started keeping a journal of all these small things were noticing. Our life has obviously changed hugely in the last few months, but the last few weeks have been amazing.

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Now on to the less than ideal news. The last two injections have not been without issue. Last week, Millie threw up and broke out in hives. This week the hives were back with a low grade fever. The doctors aren’t overly concerned about this; it’s not an uncommon reaction with enzyme replacement therapies. Millie’s body sees the injected enzyme as a foreign object and launches an attack to try to “fight off” the enzymes, resulting in what appears to be an allergic reaction. Both times, we’ve spent the day in the hospital with IV Benadryl, steroids, and anti-nausea meds. She was fine by 4 or 5, but they were both pretty trying days.

Because this has happened to other kids, the doctors have a plan. We will give her pre-meds next week to “prime” her body for the injection and weaken her immune system slightly to let the enzymes in without a fight. Assuming this works, after a few weeks/months they should be able to phase out the pre-meds as her body gets used to the enzyme. The important thing here is that this is not unusual and the doctors aren’t worried about it other than the discomfort it causes.

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Because I would be remiss not to talk about my champion little dude, Nate is doing great. He’s rolling around like crazy, has got quite the vocabulary of baby sounds going, and is just so mellow and smiley. Justin is convinced he will be crawling within the month… but I’m hoping for a little more time!!

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In other news, it snowed last week. And it was beautiful. As long as I was able to watch it from the warmth of my kitchen windows and didn’t have to go outside… But you know what? I’m not even worried about the impending Chicago winter anymore. MY GIRL WALKED THIS MORNING.

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October 23, 2019 / JustinKays Porter

Two Injections and Fall is Here!

Before I give you any updates, I have to say THANK YOU. Justin and I are so grateful for your generosity… If you know me, you know I am not usually at a loss for words. But I am quite literally speechless when I think of all the things you have done for us. The gifts, the love, the kind words, the support, the happy thoughts, the recommendations, it has all been received and so so so appreciated. I really can’t say anything other than thank you, even though it feels nowhere near enough. And please know that if I haven’t responded to your call/text/message, I will with time. I’m overwhelmed, but I’ll get there.

We are getting settled and our house is feeling more and more like a home everyday. We get so many Amazon deliveries that we are on a first name basis with our delivery people (again, thank you!!!). Pictures to come as soon as we figure out what to do with the mountains of cardboard that accumulate faster than yellow and red leaves on the sidewalk. It is definitely feeling like fall in Chicago; and by fall I mean what I would normally consider winter weather in California. This California girl is in for a ride awakening in the coming months!

Millie had her first treatment last Monday and her second treatment just a few days ago. The actual injection is pretty brutal, but it only lasts a minute and she recovers surprisingly quickly. As soon as the injection is finished, she is talking to the doctors and telling them (with a smile) to leave. “Byyyye!” This little girl is my hero and I am so impressed with how she continues to handle all of this. We think Millie has been more smiley and interactive than usual, but it’s hard to know if we are just reading into things. Back at home, she has been pretty afraid/unwilling to go play at the park for the last few months, and every day for the last ten days that we’ve walked by a play area she yells “play” and wants to get out

Ma has been here for a week helping out and visiting. While we haven’t been able to do too much fun stuff (2 kids, no car, and questionable weather put a damper on things!), Millie and Nate (and Justin and I!) have loved having her here. Justin was able to head west for some work events, and Ma and I survived just fine with the kiddos. Just today Nate has discovered that he can roll over multiple times in a row and actually move across the room. Which he loves and has me more than a little nervous about what else he will doscover, and how quickly he will discover it.

We are all doing well. Keep sending those positive vibes our way, we feel them every day ❤️