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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!)

7 Comments

Leave a Comment
  1. susanwils / Dec 9 2019 7:44 am

    Reading your posts with happy tears. I know this has been an exhausting adventure you wouldn’t wish on anyone. I’m so happy to see all the little advancements to Millie’s health. Watching her little tentative steps turn into more confident steps. Soon she’ll be running and you’ll have two toddlers to chase! Happy to see you settling in. Quite an adjustment from California!
    Hugs and continued prayers to you all!
    Susan

  2. nancy mcelroy / Nov 28 2019 10:13 am

    Beautiful post! Kaysea, your words, photos and videos are so honest and full of love, joy and hope. We’re all here loving and cheering your beautiful warrior family on!! Go Millie!! 💕

  3. nancywporter / Nov 27 2019 10:27 pm

    I really look forward to your posts. Your pics and storytelling make the actual good news even better. Feeling so thankful for the doctors, researchers and entire medical teams who endeavor to save and improve lives.
    Grancy

  4. michaelstpaulporter / Nov 27 2019 9:13 pm

    Thank you for the updates, and all the wonderful photos! Much love and wishes for a very happy thanksgiving for you all.Xoxo Michael & KjemSent from my Samsung Galaxy smartphone.

  5. Bob & Roni / Nov 27 2019 7:06 am

    Weezer! This post is Thanksgiving in itself! Thank you for sharing. Love and prayers.

  6. Ma / Nov 26 2019 1:27 pm

    So wonderful ❤️ Pa Ma and Ann all got teary. Hard to read your last paragraph out loud, haha, but Ma got it together
    Xoxoxo

  7. EE / Nov 26 2019 12:54 pm

    Happy Thanksgiving, Porters!! See you in less than FIVE DAYS!

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