Besides the fact that today marks one year since Tori last smiled, there is a great deal for which we are thankful.

Tori has been doing amazingly well since we corrected her sodium levels.

Her breathing has been perfect for a couple of weeks (no apneas!) and we are beginning a trial wean of her oxygen flow to see how she does. Already today, after dropping from 3/4L to 1/2L, she has kept her O2 sats above 95! On her own!

She has been feisty and has gone back to not sleeping, which is not fun, but it is encouraging. 😄

She can hold her head up for a minute at a time. By herself. We assume that can be attributed to her not being on baclofen anymore (about two months now).

She is nice and relaxed, not tense, constantly now.

She is alert and focused.

She has been more talkative than she has in weeks, if not months.

We are incredibly encouraged by how well she is doing. We don’t take anything for granted and we know it can change at any time. 

We don’t know why God continues to allow Tori to do well and to still be with us, but we are unbelievably thankful that He does.

Here are some recent photos of her – mostly of her not sleeping 😉❤️

Thank you for continuing to pray for our Tori! ❤️

    
    
    
   

13 responses to “Tori Update”

  1. Tori looks very serene and comfortable. I hope that is a comfort for you…….she is such a beautiful angel……we are always praying.

    Liked by 1 person

  2. Minerva Shindler Avatar
    Minerva Shindler

    Such encouraging news! I have been having a very hopeful feeling about Tori during the past few weeks!

    Liked by 1 person

  3. Lesa and Brennan- How Precious she is! Everyday..continuing to pray, for ALL of you! Love you guys.

    Liked by 1 person

  4. She just mesmerizes me with her beauty! Wonderful answers to prayer! And she’s looking so “toddler-ish with her new hairdo–so cute!!

    Like

  5. Tori is such a beautiful little gilr my prayers are always with her

    Like

  6. Toi ia such a beautiful little girl she is always in my prayers

    Liked by 1 person

  7. You all remain in my prayers. I love that she’s looking more and more like a little girl, especially with the pig-tails.

    Liked by 1 person

  8. Prayers continuing daily, as well as praying daily for a cure. God bless.

    Liked by 1 person

  9. g2-9ca91ffb7cecb581c8306332aa50e050 Avatar
    g2-9ca91ffb7cecb581c8306332aa50e050

    Lesa,

    I’ve been praying with you and your family for nearly a year now. Tori has grown so much, and she is so gorgeous.

    I pray blessings for your beautiful family in 2016

    -Kelli Boyle,

    Fairbanks, Alaska

    ________________________________

    Liked by 1 person

    1. She is such a beauty! Such encouraging news for you!! I don’t think the fact that she has such loving , attentive parents has anything to do with her doing so well either. I will continue to pray for your sweet family. ❤️

      Liked by 1 person

  10. So happy to read this! Hugs to little Tori and to you as you continue to take a day at a time and treasure the moments! Continuing to pray for God’s healing touch!

    Liked by 1 person

  11. Karen and Craig Avatar

    Victoria, Princess of the King: You are Beautiful! What a joy that you feel relaxed and calm and are relying more on air oxygen, as Your Creator has designed for you, all along! We continue to beseech Him continually for the total Restoration of His Temple: your earthly body! May His Presence inside of you continue to sustain and redeem you, by His Son’s Blood, which will never lose Its Power!
    xoxoxo

    Liked by 1 person

  12. So precious.

    Like

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