Day of rest

Understandably, Scout is in a lot of pain.  We are trying to stay on top of that.  We are trying to give her the most restful day as possible. Keeping the room quiet and florescent lighting free. She’s the most disturbed when the doctors or nurses come in to get her vitals or check on her.  Luckily, the staff listens to us and are great about trying to be the least invasive possible.  Timing all meds and vitals together so that we keep the disturbances to a minimum.  When we do have to mess with her,  she is speaking coherently and directly “don’t touch me”, “I just want to lay down”, “I just want to hold your hand mommy”.  We even thought she had finally fallen asleep and she said “I hear a baby crying”, who was in another room.  So we know that she is very aware of her surroundings.  We are thankful that she is very much cognitive right now and communicating with us.

She doesn’t want to open her eyes.  They are very swollen today.  The more she opens them,  the faster they will heal.  We have tried a couple of things to coax her to do so,  but alas, she is not ready. She is on IV fluids because she really isn’t in the mood to take anything by mouth yet. But we are hopeful and expect that all of these things will change in the next couple of days.

Her ophthalmologist came in this morning and said he was thinking about her procedure last night.  I think he needed a little time to process what he did the day before.  He said he had never seen anything like her eyes when he got to the dissection and repair yesterday.  I didn’t say it, but I was all ,’That’s what we’ve been trying to tell you’.  But here’s the deal.  The large majority of the medical community knows very little about Loeys-Dietz Syndrome.  So even great and skilled surgeons at great hospitals are just starting to figure this stuff out once they get in there and take a look at the insides of these folks.  They are physically very delicate creatures.  But their resolve and will is stronger than…let’s go ahead and say for Scout’s sake…a lion.

Thank you for your continued prayers.  So far we see no signs of infection or respiratory distress.  Please pray for great healing today, for good rest, and no complications to rear their ugly little heads.  And Thank God for what he has done so far.  Thank God for the good things in your life.  I promise you that focusing on the blessings you have will do your body and mind way more of a service than dwelling on the negatives.  Life is a gift.  Go get some sun, get off of facebook, don’t watch the news, do one of those pintrest projects you pinned, hug your people, write a note to someone whose been on your heart. Get unplugged today and go live that life you’ve been given.

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18 Comment

  1. Jeanne Culp says:

    Thank you for this beautiful update, Mandy. It amazes me how you can remain so articulate and strong, but I know the answer – you lean on the Lord, trusting Him and giving Him the glory. Thank you for that example. You and Gabe are in our prayers and of course, precious Scout. We love you.

  2. CeeCee says:

    Looks like she’s got her lion next to her heart.

    1. Tara says:

      And Dr. Markham came by for a visit and saw that she was snuggling that lion he gave her.

      1. Amy Mendez says:

        You guys amaze me. I will forever remember the weekend we were blessed to be able to get to know Scout better and see her in action. Our kids remember her too and want to hear all the updates! She is such a fighter and so many are praying for her. I loved the end of your post about getting off technology and enjoying life. Jayden and I were literally just laying in the bed of the truck watching the clouds go by! Wouldnt trade that for anything! We will be praying!!! Love you guys.

  3. Erica Hilden says:

    Praying for strength and healing for her little body. She is amazing, it is so clear where she gets her strength, straight from God and through her amazing parents.

  4. Darlene O'Neal says:

    Another day closer to being pain free and healing. Praise God for that. You are all in my thoughts and prayers.

  5. Mary McDanal says:

    I have been praying for you, Gabe, and Scout daily. Thank you for being who you are. <3 Love ya'll.

  6. Karen Holland says:

    What a precious, beautiful baby. You are all in my prayers and I thank God for his blessings on you!

  7. ann white says:

    so happy that things are progressing as well as they are! aren’t we thankful for doctors, hospitals, anti-biotics, and vaccines? we’d have a hard time getting along without these things! praying for your family, and so glad tara can be there.

  8. Mary Canady says:

    Thank you for updating. If love can do it, Scout will heal and grow like Clifford the big red dog. Our love to you all!!!

  9. The Spences says:

    Kisses and hugs to Scout! Praying for healing and that she will soon feel well enough to boss Henry around again :)

  10. Brandie Starr says:

    Mandy and Gabe,
    Thank you for your wonderful example of faith. I pray for Scout’s relief and healing…100%. What a might God we serve…A great healer. Pray for you two as well. I know it is trying to see your child in pain. God bless you all.

  11. Amy Schreiner says:

    Praying!! Love you all lots!

  12. Shannon and Rachael says:

    Scout is in every prayer here….especially the ones from Julianna. what a strong and amazing child you have. You are all On our hearts and in our minds.

  13. Deena Hargrove Jordan says:

    We’re pulling for you Scout! Love coming from Deena and Joe to all of you!

  14. Terri Walton says:

    I am praying for you Scout! God loves you so much and He is caring for you better than anyone else can! May you rest little one w/o pain. Rest sweet baby, rest. Praying for your healing.

  15. Susan Olsen says:

    Thanks so much for the update. It enables us to pray bigger and bolder prayers for Scout’s healing & recovery and peace & endurance for you & Gabe! Greatly appreciate the reminder to cherish the many blessing God has given us. Love you guys!

  16. Christine Buttrey says:

    Awww-sweet baby girl! I pray for the comfort, patience and long suffering that the Lord continues to give to this wonderful family. I love hearing about Scout (although we have never met!) and all positive things Mandy has to say! Our prayers are with you!

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