Sick Again But Still Truly Living

For the last two days, Julianna has had a little “frog” in her throat. The only way you knew about it is if you were right next to her in a quiet room. It’s the tiniest of noises when she clears her throat, but it was enough to put us on alert.

This morning, Julianna asked for cough assist as soon as she woke up. She has never done that before. The frog sounded larger, and we had to do extra treatments this morning.

To make a long story short, things got worse throughout the day. We have been through this before with her, and we know the things that happen next. She’s working harder to breathe, and she needs extra oxygen to maintain normal oxygen saturation. A few times, I have felt that awful rattle in her chest – it tells me that she has junk that she cannot clear. So far, we’ve been able to get it with extra cough assist.

The new thing this time is that she cannot tolerate laying on her back. It’s hard for her to breathe. Part of it is that junk goes down her throat when she’s laying down. The other part is that her stupid disease has paralyzed her right diaphragm. We found that out last year. Who knows whether or not the left one is working? Have I mentioned how much I HATE neuromuscular disease?

The good news is that she is still happy and comfortable most of the time. She actually wants to play, and that’s what we’re letting her do.

This morning, we told Alex that Julianna was probably getting sick. Would he give her a hug? He went into her room and gave her a five minute hug. He has never done that before – not even close. I don’t ever want to forget Julianna’s face while he was giving her that hug. They decorated a gingerbread house together and actually cooperated. Alex told her that she could continue the decorating while he went to Tae Kwon Do. Julianna went on for a while but then said we needed to wait for Alex to finish the house. 

Our kids are like everyone else’s at this age – they fight and each want their own way. This morning was different.

I don’t know what the next few days will bring. I am, in turns, heartbroken and in denial. She was doing so well.

Right now, at this moment, she is happy, comfortable and doing what she wants. My prayer is that this continues until the very end.

27 thoughts on “Sick Again But Still Truly Living

  1. I M SORRY YOU FEEL SICK AGAIN, I HOPE YOU FEEL GOOD AGAIN, PRAYERS ARE WITH YOU JULIANNA. Take care and have a Merry Christmas too, hope you get want you want for Christmas!


  2. Read the prayer I send you and believe and faith your will make her whole. and you her ask her do she believe GOD can heal her. and believe I believe


  3. Michelle,
    Lots of people have Julianna in their thoughts, prayers and heart including
    myself. We know that you, Steve and
    even little Alex are doing everything
    humanly possible to keep her healthy,
    happy and comfortable.
    I’ll be saying some extra prayers for her
    good night foward.
    May God Bless you, Steve, Alex and, of
    course, Julianna.
    Dec 05 7:21pm


    • Sending love and prayers to ~Princess Julianna~ and her family, all the way from New Zealand!
      We too are blessed with a special daughter, Rebekah aged 7 who keeps us on our toes with heart and lung issues. Our family like yours, knows that children are precious gifts from the Lord and it is a privilege to have them in our lives. You have been given the honour of having such an amazing daughter and God will be close to you all through your journey, especially the difficult days. Julianna is an inspiration and blessing, a precious child that glorifies The Lord. She has touched my life and I pray for her daily.
      Thank you for sharing your treasure. X
      From Sarah


  4. I’ve not sent a reply before today, but I need to express how beautiful your family is. In spite of all that you have been through, and are going through, the Light of Life shines in Julianna’s eyes. She is such a beautiful girl. God’s love, comfort and peace is apparent in your posts online. But it really shines in His work with Princess Julianna.


  5. Im praying for you Michelle , Steve , Alex and Julianna!! I make sure everynight to read any new updates you post and I have to say how amazing your precious daughter Julianna and your son Aex are, I myself have a 5 yr old son and as busy as they keep us they always bring out the good in everybody who they meet. God works in mysterious ways at times but in the end i really believe he does whats best for everyone and J is truly an angel he sent to show all of us that!
    Keep your hope up always and good things will keep happening! Have a Very Merry Christmas and Happy New Year to you and all of your extended family!!!


  6. God bless you and your family. Praying for a miracle. I truly admire your dedication and your strength . Can’t even imagine being in your situation


  7. Michelle,

    I just wanted you to know that you and Julianna are thought of often, and you’re prayed for just as much as you’re thought of.

    I love you all with my whole heart and I admire all the courage and strength of such a brave little girl. She’s such a big inspiration to us all.

    In His love,


  8. Hello Julianna,
    I heard you were not feeling well yesterday. It’s Sunday today and I sure hope and pray that you are feeling better today and will get better each day during the week. I picked out some Hello Kitty things
    for you for Christmas and something for Alex too and will be sending everything to you this week. If
    it’s ok with your Mom and Dad, it’s ok with me to open your presents when ever you like.
    Lots of people are thinking about you and your family and we are all thinking, hoping and praying that
    you get better soon and have a very MERRY CHRISTMAS!
    December 06, 2015


  9. Thank you so much for your sincere compassion and courage in sharing with the world this very personal experience that you and your family are going through. I have never left a respond however, I want to extend my heartfelt appreciation for allowing me to be on this beautiful journey with you all. My prayers are with you always. Yours in peace and comfort, Toni S.


  10. I’m praying for all of you. How precious are your children. Thank you for sharing your journey and the faith that gives you strength. Miss Julianna’s life has touched many in her short years. Love, Linda from Make-A-Wish


  11. hello hello Julianna!

    haven’t been able to catch up with you these few days because I’ve been abroad in China (where your blog loads reaaalllyyyy sloooowly. you may give a big Stinkeye in response now) – so I’m glad to finally be able to catch up now 🙂

    See! You are precious & loved, that I’m tryna even defy the slowpoke-ness of Chinese internet to catch up haha. Anyway, am sad to hear you were poorly, but glad you’re better now & am super encouraged that you are super brave! Haha, I absolutely Do Not think my brave face & cute face are the same – I think it would be complete opposites of each other. Oops.

    You should have received (or will be receiving) a package from Singapore, mine’s the one with the warrior princess poem – I hope you like it, bcos I really had such fun putting it together for you! You can open it as soon as you want, or wait till as close as Christmas if you want – it’s completely up to you!

    Alex gets some stuff too, because he’s an amazing Ninja Big Brother who gives 5-min hugs teehee! I would love a brother like that too. 🙂 You both can share the stuff, no fighting (or I shall Stinkeye you, halfway across the world .. I can still see you despite HAHA ;-))


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