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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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27 Comments

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  1. seabreezecindy / Dec 7 2019 5:25 am

    Takes me so long to read your updates since I have to stop so often to dry my tears. I actually have to wait until the blur goes away. But what JOY…..can not wait to see her and all of you. Oh, and have I said this before? You should be writing, you know, like a book writing!
    Hugs and love, aunt Cindy

  2. Danielle Cronin / Nov 15 2019 8:13 am

    I just love reading your beautiful words and seeing your beautiful pictures. We are thrilled to hear the good news. Sending you soooooo much love! xoxo

  3. Anne & Jeff Williams / Nov 7 2019 2:45 pm

    The stories are miraculous, the photos are just amazingly beautiful. I see both Justin and Kaysea in Millie’s appearance.. moreso when she grins!!! Thank you for sharing this awesome news and we look forward to more of the same. Continued prayers and positive thoughts coming your way every day!

  4. Kim Clet / Nov 7 2019 7:17 am

    The BEST news ever! Hugs to you all.
    Kim

  5. Stacie Kohls / Nov 7 2019 6:50 am

    Thank you so much for sharing with us, you have beautiful children & will continue to be in our thoughts & heart.

  6. Jenny Bacio / Nov 6 2019 8:20 pm

    Amazing!!! Go Millie go!! 👏🏼👏🏼👏🏼
    ❤️❤️ Love, the Bacios

  7. Dean / Nov 6 2019 6:01 pm

    things seem promising, with both ups and downs! Thank you for sharing this as well as your wonderful photos of the kids and the varied weather during the fall season:)

  8. james witkowski / Nov 6 2019 5:21 pm

    Happy tears indeed. Shelley and I are thinking about you all. Go Millie and Nate

  9. Linda and Dan Forbes / Nov 6 2019 4:55 pm

    Nate was going crazy!! Speed demon!!❤️❤️❤️❤️ Loved it!!👏👏👏😂😂😂

    Sent from my iPhone

    >

  10. Linda and Dan Forbes / Nov 6 2019 3:58 pm

    OMG.!!!! Hip hip hooray!! We are so happy for all of you👏👏👏❤️❤️. Amazing! Thanks for the wonderful positive news!! Xoxo

    Sent from my iPhone

    >

  11. DeeDee Trent / Nov 6 2019 3:29 pm

    Thanks for all of the wonderful updates and keep the good news coming. Truly something to be Thankful for. Also keep the great pics coming of both of those adorable children.

  12. Carla Layton / Nov 6 2019 2:27 pm

    It is so great to hear the progress that Millie is making!! I love seeing the photos and reading about the progress. Nate is getting so big! Will keep the prayers coming.

  13. Kristy Ruhkala / Nov 6 2019 1:09 pm

    Wow!!!!! Impressive progress! She looks so happy and healthy too. Walking is amazing with lots of “play” too! Outstanding news! 💗👍🙏

  14. Molly Anderson / Nov 6 2019 12:50 pm

    Justin andKaysea, thank you for sharing this amazing news! This story warms my heart. So glad Grancy and Papa Dirk are there to see Millie’s progress and also enjoy sweet baby Nate. Pictures are gorgeous. Is someone knitting those beautiful hats for your kiddos! Much love, “Aunt” Molly

  15. nancywporter / Nov 6 2019 11:52 am

    We are overjoyed to be here and see daily improvements in Millie’s mobility, appetite and overall outlook! It feels so good to be excited about her next steps and to see her be excited too. And thanks to Nate for being the most pleasant, cool and collected 5 month old I’ve met! Love Grancy and Papa Dirk

  16. Mom / Nov 6 2019 10:33 am

    Crying!! So happy for you guys! Fantastic progress, best news I’ve heard in a long time. Sending love from the east coast – we’ll be snowing soon too!

  17. Mary Wurster / Nov 6 2019 10:20 am

    Crying happy tears! So happy Grancy and Papa(?) are there to share in the joy of the moment!

  18. Mary Wurater / Nov 6 2019 9:56 am

    Crying happy tears for you!!! Sending love to you all! 💕💕

  19. Brandie Laughlin / Nov 6 2019 9:51 am

    I sobbed right on with you guys through this whole post. I’m over the moon. Hang in there lovies. Sending you all the love from B & K.

  20. Jane Webster EYLER / Nov 6 2019 9:34 am

    Oh, Justin and Kaysea! I am just so thrilled and happy for you with this wonderful news! Will keep praying for all of you. Tears of joy coming from Aiken, SC. Love, Jane and John.

  21. Ma / Nov 6 2019 9:27 am

    So many happy tears ❤️❤️❤️❤️❤️
    All my love
    Ma

  22. Janet Norris / Nov 6 2019 9:17 am

    Praise the lord!! Words cannot describe how joyful I am with the amazing results. Enjoy 🤗

  23. Uncle Todd / Nov 6 2019 9:01 am

    Way to go Millie! Keep up the great work Mom and Dad.
    Happy Tears from Morgan Hill

  24. Chelsey R. Perry / Nov 6 2019 8:56 am

    Fabulous! Love you, Porters!!

  25. Roni Hartley / Nov 6 2019 8:55 am

    Thank you for the beautiful update (it is hard to type through tears). Thank you God for the miracles Millie is experiencing from the medical interventions and the utter joy of Nate’s newborn activities. Sending love and continued prayers to your beautiful, amazing and strong family, Bob & Roni PS I just realized that I could respond to your blog; that it is a “comment-reply” not “No-reply” address. Some time it takes old dogs a while to see new tricks! 😊 XXXOOO

  26. Clara Meyers / Nov 6 2019 8:30 am

    Hi Kaysea,

    I’m all teary from reading your wonderful post. That is fantastic news!!! I will continue to pray that the injections do their thing!!!

    I’m so glad you got to meet Bobby. He really enjoyed meeting you and seeing Justin again. Can’t believe he hadn’t seen J in over 20 years. My boys idolized the Porter brothers when they were little!

    Take care and I hope that Chicago keeps treating you well!

    clara

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