Monday, August 8, 2011

the end of a long day.


I am OVERWHELMED at the support and love that we all have received. Not just a fluffy kind of love but the Christ-like, self sacrificing servant kind of love. I feel the body of Christ around us so strong and it has truly made this withstand-able.

Not a lot of "new" news today. They informed us that the surgery will be 11:30 on Friday, which I am looking forward to and dreading at the same time. Probably a lot more dreading than looking forward too. We are reassured that the surgeon who will perform it is "the best" and an expert at this particular operation. Non official diagnosis is Craniopharyngioma, yes a mouthful.

Levi wasn't cooperating for some of the initial exams today but the neuro-oncologist suspects some loss of vision on his left periphery. We expect to see an neuro-opthamologist tomorrow and they should be able tell more. Of course what vision he has now is not as important as what vision he has after the surgery, since damage to the optical nerves is one of the major concerns.

His spirits seem much better today, I got to spend time with my precious Levi the way he was before all this made him so miserable. He spent his day asking for Choc Chip Kids Cliffs Bars which he knows as "chocolate bar", and when I mean spent his day, I really mean it. Let's hope tomorrow he might get a taste! Tonight he is on clear liquids, but I am happy to say that he has been holding those down quite well and even asked to feed himself his popcicle. I had to look the other way to be putting all that food dye into him, I mean how do they even make red that bright anyway? (sorry, it' just a thing of mine)

Hoping I can get some sleep tonight, needless to say last night's attempt was a complete failure. Thankfully Dan is a sleeping champ, or rather lack of sleep champ and is going to do another night at the hospital while I run home.

Thanks to you all for reading this and loving, really loving my little Levi.


14 comments:

  1. Praying for all four of you. Praying you get some much needed sleep tonight as well.
    "May the God of PEACE, GUARD your heart and mind in Christ Jesus!"

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  2. Thank you for the update! He is the cutest little thing.

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  3. holding him in prayer as he sleeps tonight. praying you get some rest too.

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  4. Oh Kara. I just saw this, and my heart breaks for you. We will be praying, ofcourse. He is Sovereign, He is Good, He is ALL POWERFUL. Jesus. Oh Jesus. I will pray His name over and over for your little boy. So much love to you. Katie & Ryan

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  5. Thank you so much for the update since I am always checking up to see if you have more news on him. I can't hardly stand it since it could have been any of our kids. Brian and I have been researching the different brain tumors and we are sooo happy to see that this type is much more curable than the others. What a relief! We read that there can actually be a permenant cure if it's totally removed...and that's so good to hear! We will be praying for your sleep tonight Kara.
    Ann-Marie
    PS....I totally get the dye thing haha! You are such a great mamma!

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  6. Sweet Kara, I can't even sleep... and Bubba just told me there is a new post, so here I am again at the computer, glad to hear an encouraging update on you guys. I will talk with you in the morning, such a sweet face lovin' on his Elmo! Keep us posted, we are praying.

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  7. Hope you got some sleep last night Kara and that Levi can have a chocolate bar soon! Praying hard for you and yours!

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  8. You've been on my heart and mind ever since I heard the news. Praying for all of you, and praying for the miraculous, fully knowing that God will receive all the glory. A verse that has helped me time and again is found in Psalm 94:19 - "When my anxious thoughts multiply within me, Your consolations delight my soul." Praying you will not be tempted to run ahead of God, and when feeling anxious about the unknown you will be reminded of the truths of God's Word and His promises which are sure.

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  9. We've been friends with Corrina for over 20 years so that makes you like family too. :) Know that we are holding you all up in prayer. We serve an awesome God that is bigger than brain tumors. Psalm 34:19 He delivers us from ALL our afflictions. Standing on that promise for Levi!
    Blessings,
    The Ambrose Family

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  10. Kara and Dan- our heart breaks for your family as you watch Levi go through this. Sweet Levi has been so heavy on our hearts since we heard the news. Praying constantly for your little guy! And you! Love you guys, Kelley, Alton and Macy

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  11. Dan and Kara,

    We bear this with you during this difficult time. If you need absolutely ANYTHING-we are here for you and your family. Our love and prayers are with you continuously. May God's gentle hand hold you close to Him always. Love Scott, Jess, Kael and Brae

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  12. Love reading the updates! We continue to pray and to rejoice that our God is a God who hears. We love you guys tremendously, and it is an honor to pray for and support you in any way that we can.

    Love Jules, Keir & London

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  13. Keep it fresh...God is a miracle worker with THE ultimate healing hands. May God comofort Levi and your family during the hardship. Pray, have faith and soak in God's love. He is by your side the whole way and will never leave you...
    -Ren & Micah

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