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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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7 Comments

Leave a Comment
  1. kimberlybishop3092 / Mar 3 2020 8:10 am

    Great post. Can’t wait to see you in one week!!! love you guys XOXO

  2. Kristy Tuhkala / Mar 2 2020 9:08 am

    Fantastic she is doing so well and no more IVs!
    Pictures are so cute!

  3. Debbie Perry / Mar 2 2020 7:03 am

    Awesome newsletter. All wonderful. Saving your daughters life ❤️❤️❤️❤️❤️❤️❤️

    On Sat, Feb 29, 2020 at 5:42 PM The JustinKays Chronicles wrote:

    > JustinKays Porter posted: “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 fe” >

  4. nancy mcelroy / Mar 1 2020 8:57 am

    Beautiful post as always, Kaysea! Yes, being in the moment is a great challenge for all of us humans!!!….especially when so much is going on and constantly changing! You all are amazing ❤️ Sending love and cheering you on from Roseville 💕

  5. nancywporter / Mar 1 2020 8:15 am

    Love your update and that your exceptional lives are feeling more normal. I applaud your efforts ( and successes) to be in the moment. Not an easy thing to do. Can’t wait to see all of you and your new home. As always, if you need our help with anything, just call. 💕Grancy

  6. Linda forbes / Mar 1 2020 7:46 am

    Thanks for the great update!! Wish we could have seen you while you were home but it looked like your plate was full!! Sorry about Stanford but hopefully something else will work out!
    Winter has been mild in Chicago this year and you are definitely making the most of the Area! We love you all and thinking positive thoughts ! Auntie and Unc❤️❤️❤️

  7. Danielle Cronin / Feb 29 2020 6:39 pm

    Miss you guys! Sending lots of love and kisses to you all. So glad to hear her premed-free injection went well! Yay!!!
    xoxo

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