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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!

 

11 Comments

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  1. Danielle Cronin / Dec 19 2019 1:00 pm

    Love you guys so much. Looking forward to some spaz videos of ice skating if you guys brave the cold! xoxox

  2. Carla Layton / Dec 18 2019 10:59 am

    It’s so great to see Millie walking! I love your update and it’s great to see you all! I love Nate’s cheeks!

  3. nancywporter / Dec 18 2019 10:38 am

    Love love love your updates. One day, those boots will be hiking boots 🥾🥾. Hugs to all of you. Grancy

  4. Auntie / Dec 18 2019 10:20 am

    Thank you so much for the update!! What a trooper she is!! Smiling while getting her injection!! I need some of that bravery!
    Nate is a kick, happy happy happy!
    Glad you were home and got to see so many friends and family!! Wish we could have been there!!
    Does Millie have pt? The walker is amazing for her and for you! What joy to see her running around and I think she is too sweet to run over Nate!
    Love to you all! Keep us posted!
    Ps how was ice skating?? Did your ankles bow in!! Never was my favorite!! Xoxo ❤️❤️❤️

  5. Clara Meyers / Dec 17 2019 6:23 pm

    Dear Justin and Kay
    So great to see these beautiful photos and videos of you thriving in your “new home”. Chicago can be brutal in the winter but just wait til summer! So glad Bob reconnected with you. When you’re out on a date check out The Lodge on Division Street. So fun at Christmas! Love to all of you! Clara

  6. Bob and Roni Hartley / Dec 17 2019 9:52 am

    Thank you for this wonderful update. Your update is the most joyous news of the Christmas season. Sending love and prayers to your amazing family. And Merry Christmas!

  7. Michelle Barrett / Dec 17 2019 9:11 am

    Continuing prayers for all of you! Love the updates and smiles. You have two very beautiful children.

    Michelle Barrett

  8. seabreezecindy / Dec 16 2019 9:02 pm

    What are you going to do with it?….. “Walk” DUH. 🥰🥰🥰🥰🥰🥰🥰 and I loved the video of her walking at the library.
    Soooo good to see you “at the other home” Enjoy the ice skating, bet you do great! Can’t wait to hear about that adventure❄️⛄️☃️❄️💨
    Miss you already❌⭕️❌⭕️

  9. Christine Clet / Dec 16 2019 8:51 pm

    Love all the pictures, miss you guys!! Xo, The Clets🧡

  10. Chelsey R. Perry / Dec 16 2019 8:14 pm

    Soooooo gooooooooood to see yoooooooooooou!! Less than three weeks! Merry Christmas, Porters! Hugs and kisses from CA!

  11. Jane / Dec 16 2019 8:11 pm

    So very happy for the progress Millie is making. Thanks for keeping us informed. Millie, and Nate, also, couldn’t have more devoted and supportive parents. And don’t break a leg ice skating! You’ve got way more on your plate to deal with than any parents should ever have.

    Aunt Jane

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