12.16.2011

And So It Goes

I am posting from my phone so this will be short and sweet. Today we met with Dr. W. I love that woman. She was so honest and straight forward and reaffirmed the things that we both knew. 1) Lucy has lost too much weight. 2) We are fighting a major uphill battle. 3). We don't have much time to make hard decisions. 4) even if she does start eating we still have to worry about refeeding syndrome.

So with that being said we left the hospital with a new appetite stimulant and 3 days to gain weight. We will go Tuesday for a weight check and will know then if Lucy is destined for a feeding tube.

Fast forward to post doctor visit. Lucy asks for spaghetti and we set out on a mission to find some. Not many places carry to-go spaghetti. We find some and Lucy goes to town. I haven't seen her eat like that in months. It was so awesome. After she was done we gave her her first dose of medicine.

Fast forward an hour later. Lucy has a violent reaction to her new medicine and mom and dad are scared to death. Panicked called to Dr and one scared little girl. Everyone agrees that her little body is just too run down to handle this medicine.

Lucy is sleeping in my arms right now as we sit in a dark room. I am praying over her with emotions that only a mom can feel. It's in God's hands. I am handing it over to Him completely. I trust that He only wants what's best for her and I know he will provide the answer. Right now I am trusting in Him. That's all I have left.

And wouldn't you know. This really isn't something I can control after all.

51 comments:

  1. I don't remember exactly when or how I came across your blog. I wish I had something brilliant to say, but I don't.
    I'm just moved to tell you that your family is in my prayers.
    God bless.

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  2. Bless your precious heart, praying along with you~

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  3. Prayers for your dear little girl and entire family.

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  4. Poor sweet little girl...I am continuing to pray for her health, I hope that God gives her little body the strength that it needs, and that she is able to gain weight and get this all under control without a feeding tube. I am so sorry to hear she had a bad reaction to the medication, I pray that the Lord give the doctors knowledge to help Lucy during this trying time. May God bless your family!!!!

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  5. You can guard against refeeding by starting the feeding at 25% of estimated caloric needs and advancing slowly. Also drawing labs the first few days. Refeeding is much more common with TPN than a feeding tube. Praying for peace for you.P.S. I am a dietitian though not specializing in pediatrics.

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  6. ME AND MY FAMILY WILL BE PRAYING FOR LUCY

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  7. I am praying that Lucys appetite comes back. Owen has always had a tube and I still feed him every 90 minutes from 7am to 10pm. Some days are better than others with his oral eating.

    I can tell you that it is such a relief to know that you can control their nutrition. I started Owen on a blended diet via gtube when he turned 2 and it made all the difference in his appetite, his gross motor skills improved and his tummy issues resolved.

    I loved reading about Lucy's Make A Wish reveal party! What an awesome experience. We too got nasty comments that I just push aside because they are so ignorant.

    If you have any feeding tube questions, I'd love to answer them.

    Andrea

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  8. So sorry to hear that! Praying for weight gain for Lucy and for some peace for her mommy...

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  9. OOHHH my goodness Kate. How I cried for you & Lucy tonight. When I first read she ate that much & BEFORE her meds I was so ELATED! But, then I read on in horror and suddenly my smile vanished & my heart dropped & then broke.

    I do have to tell you though Kate, I use to work with children with special needs & approx. 50% had feeding tubes. I do understand how you feel about NOT wanting Lucy to endure yet another procedure & seeing a feeding tube in your own child when you are not use to it can be daunting for sure.

    I would be remissed however, if I didn't tell you Kate EVERY one of my parents whose child had a feeding tube LOVED it!!! Well, I should clarify...what they LOVED was knowing their child wasn't struggling to eat any more, nor were they struggling to keep the food down which was a HUGE Relief to my families.

    Some of the little ones were on a continual slow feed during the night hours while they slept, so when they were awake, they could focus on being KIDS!!!

    Some kids had both a feeding tube plus they could eat small amounts of food so they got there cake & they could eat it too!! The pressure these tubes took away from the families I know was simply PROFOUND Kate & honestly after the tube was in place & they were use to it, all agreed it turned out to be not as scary as they once thought it was.

    OOHh Kate...how I wish I was sitting beside you holding your hand, giving you a hug for support & reassuring you all will be alright.

    If you ever or want to talk, please Facebook me & I will message you back with my phone number.

    Thinking of you & praying for Lucy & her family!
    God Bless,
    Love,
    Jenn

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  10. Yep...appetite was the last thing we got back too. Took awhile....we had to do feed therephy. But even when it seems the bleakest and coldest of winter in life God had a plan. Now 22 months after chemo you would never look at him and know....remember you made her sick for a long time....just like pregnancy took 9 month to grow and untold months to recover from so does cancer. It will come. A feeding in tube is not the worst thing ever....beside just think of how easy you gave give med though it! Keep the faith! You are doing great!

    A fellow mom-cologist

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  11. I've been following your story for a while. Just know there are still lots of prayer warriors praying on Lucy's behalf!

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  12. Kate - I check your blog every day - Lucy is always in my prayers - this morning I am praying so hard for you both

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  13. I am continuing to lift Lucy and your family up in prayer! May you keep feeling His love and presence!

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  14. You are constantly in my prayers, as is your sweet family. Rest in Eph. 3:20.

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  15. Lucy must have been on my mind for a reason - was telling a friend about her just last night. I am praying for you all, always.

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  16. I have been praying these past couple days even more 'for a little girl I don't know named Lucy'. I'm praying her appetite will be fabulous and she will have a healthy weight gain. Expecting wonderful things. Your yet to be known friend in Christ, Angie

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  17. Kate,
    My heart is broken for you, as a mother. We always want to fix what is broken with our children. It is so emotional praying for you guys because your beautiful family IS in God's hands. We want to fix things ourselves and you are right, we do just have to rely on God to get us through it. Please find some comfort in knowing that people all over are praying and lifting up Lucy and your entire family. We are praying without ceasing.

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  18. I too found your blog last spring and have been following Lucy's journey. Prayers to you and your family. I can't imagine what the last 8 months have been like for all of you, but I so admire your strength, courage, and faith.

    I don't know how to post this anyway except anonymously.
    Linda in Kansas.

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  19. I have been following your blog for months, but have never commented before. Please know that there are people in Montreal, Quebec pulling for Lucy.

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  20. Praying hard for you guys. I'm so sorry about Lucy's reaction to the medicine, but so glad that she ate. Praying for wisdom and God's guidance for you, Erik, and Lucy's doctors. May Lucy eat and gain weight without the medicine.

    Thinking about you today. Wishing you peace.

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  21. Hi Kate. You don't know me but I have been following your blog for a long time and praying for Lucy. Your family and especially Lucy has completely captured my heart. I am so sorry for your latest struggles with weight loss/feeding issues. I was hoping to alleviate some of your fears concerning feeding tubes in case that becomes the answer to Lucy's current problem.

    I am a nurse and have had a lot of experience with feeding tubes, both at work and personally. My 20 month old grandson had to have one placed during his first year of life. Feeding tubes are nothing like they were years ago. They are so easy to use and the average person will never even know she has one. The ports fit nice and tightly against the abdomen. Most parents absolutely hate the idea of their child having one but once it is placed love it. Gone is the fear and the worry about how many calories they are getting and they are so incredibly easy to use. Believe me when I say that after all you have been through, the feeding tube will be a piece of cake. Please don't fear it. I promise it is nothing to fear and you will wonder why in the world you ever did after she gets it, IF she has to. My daughter was a level three special education teacher before she had children so thankfully she also had lots of experience with them before her own son had to have one. I think the doctors were surprised they didn't have to work hard to convince her that he needed one. She knew how easy and nice they are to use and actually wanted him to get one so she didn't have the constant fear any longer whether or not he was getting enough to eat.

    I have never commented before but really felt led to encourage you in this feeding tube possibility and to assure you it really isn't a bad thing at all. They can actually be a blessing and take away a ton of worry.

    Praying for you,
    Luann Holeman

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  22. Hold you child.
    Have faith.
    All will be well.
    You are doing an awesome job for one amazing little girl.

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  23. Hi Kate,
    I am lifting Lucy up to the Lord, He will guide and direct this. I know it is so hard sometimes but keep your faith in Him.

    Praying and praying,
    <><

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  24. I pray that she continues eating like she ate the spaghetti, therefore putting on weight. Then she won't need the appetite stimulant, right?

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  25. We are thinking about you and your family and praying for all of you every single day. We are here in Memphis if there is anything we can do...just know you are being prayed for by so many of us.
    Love,
    The Culpeppers
    Suzanne, Clay , Murphy, and Madden
    www.theculpeppers.com

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  26. U and u family r in our thoughts and prayers and as trivial as his sounds, please let me know idly family can do anything for your family for Christmas...buying gifts...wrapping presents, doing any errands for u. I will even bake sweet Lucy some sugar cookies...his year your family is my Angel Tree....

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  27. We've been praying for all you through this journey and will now pray specifically for this latest eating issue. May God continue to heal little Lucy and sustain you and Erik and the rest of your family. Your strong faith is an inspiration to others.

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  28. Continuing to pray for you and your precious baby girl!!

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  29. I cannot speak about a feeding tube, but I can most definitely speak about the terror, the near-migraine headache, the helplessness...and at last, at last, after how many days, months...minutes, hours - sitting in the dark and with open arms and the feelings that only a mother knows, hand her to the Lord. And ...He's had her all the time, and He will. Bless your mother's tender heart, Kate.

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  30. Kate - I just wanted to let you know Holy Trinity Lutheran Church in Elgin, IL prayed very specifically for Lucy's eating/weight issues today.

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  31. Dearest Lord Jesus, You created food and our bodies, and You have given knowledge to doctors and caring hearts to parents. Today we ask You to please provide for Lucy to get the nutrients and calories she needs. We love You, Jesus.

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  32. Hi Kate,

    It's Jenn again. Thinking & praying for Lucy & your whole family. I'm worried we've not heard from you - hopeful things are better!! Please just know many, MANY people are praying for you all!!!

    Thinking of you...
    Love,
    Jenn

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  33. Kate I read your words and know you still believe that God is and always will be in control of our fragile beings and the day of redemption shall come for those who believe, praying for Lucy, love you guys..

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  34. How is lucy?? Please update whenever you have time! i'll keep praying and checking your blog to see how she's doing!!!

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  35. Mike, Paula, Kelley, Lindsay - Kate i sit here and read your words and know that you do believe God is and always will be in control of our fragile beings and the day of redemption will come to those who believe, praying for Lucy, love you guys..

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  36. Arlington Presbyterian Church lifted up prayers for Lucy yesterday, specifically for the weight/food issues. She is always on our prayer list.

    ....waiting anxiously for an update.

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  37. Lots of prayers and warm thoughts to precious Lucy and your wonderful family, from London UK.

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  38. Kate, my family has been praying for Lucy for months now, and we just recently prayed for this issue in particular. Although we've never met, we all have a great love for all of you. May your entire family have the most fantastic Christmas ever! I pray for your Holiday to be the best one yet for you, Erik, and all of your kids. May peace, hope, and love surround you as God's direction becomes clearer than ever in your lives. Charity in Atoka

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  39. I have been praying for Lucy and your family for awhile. I have been doing the breast cancer thing for 4 years now. Remember the word STABLE- adjective meaning constant and steady, but it is also a noun the place where animals are kept, the place where Jesus was born. STEADY, CONSTANT, JESUS

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  40. I ran across your blog after Lanie Watkins passed. I knew the family from the school I work at. When I first landed on your blog, Lucy reminded me of my cousin who had the same cancer. She lived until she was 33, but has since gone home to see the Lord. With that connection, I have kept up with reading what you have posted and praying for Lucy. My heart broke reading this. I pray Lucy is better today than Friday, and I pray healing blessings over her.
    God bless you and your family.

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  41. Praying for beautiful Lucy every single day.

    Love in Christ,
    Allison, Marshall, Reece, Bryce & Juliana Carpenter
    Team carpenter.Blogspot.com
    (team carpenter is "all one word" but my iPad won't let me type it that way!)

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  42. Kate,
    Daily I pray for Lucy and your family. You and Lucy have touched me in more ways than you will ever know.
    Praying you feel continued peace.
    Cindi Bohmann

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  43. Praying for you and your family.

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  44. Praying for Lucy and that all of you to have a blessed Christmas.

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