Monday, June 20, 2011

All the King's Horses and All the King's Men would not put Christian back together again...

 Christian is home from the hospital after a flare up of the original TM assault. He responded well to the treatment and didn’t need any cathing after 12 hours of the first steroid IV infusion. They had a MRI study done of both the brain and spinal cord. It confirmed that no new lesions were present. However, it did show atrophy of the spinal cord; which means the spinal cord did not regenerate from the damage done. While in the hospital the FIRST time, Doctor Lotze, explained it to me like this….C’s spinal cord was hit hard by a storm, damaging it.  But the body has electricians and they would go rewire the system. Electricians are over worked and underpaid; so often times they show up late and work slow. He told me to be patient and not give up hope. That is why he gave C the six month window of opportunity to improve…he was expecting the cavalry to come through in the end.  Fast forward to THIS hospital stay and his most recent MRI. The attending neurological doctor told me that C’s condition would not improve because his body did not fix the damage done by TM, that his spinal cord tissue had now died. As I type these words, vomit came into my throat and tears welled in my eyes. I refuse to hear that. I need to hear those words from Doctor Lotze, unfortunately he is out of town for the next two weeks. So I am impatiently waiting but I have already decided how I will respond if he tells me the same thing.  I know there is always HOPE in Jesus, our Healer but there comes a time to deal with what is right in front of you and pray for something better. This will be my response. I hope everyone can respect that. C will still benefit from Physical and Occupational therapy. That will re-strengthen what was weakened, and  re-teach what was forgotten, and GOD WILLING re-gain what was lost. This will also be his time to learn how to accomplish tasks as a boy who is paralyzed and had limited use of his fingers. We will also set goals; so C can plow right through them. He is determined.  And if by GOD’s grace his legs move, his therapists and I will make sure they are ready! Thank-You so much for your prayers, and continued support. We (Jack and I) are in this for the long haul. We will exhaust every possibility and not stop until C’s potential is maxed out; giving him every chance, every opportunity of a life uninterrupted by Transverse Myelitis. Please keep praying for Christian. We believe in miracles.


  1. Thanks for the continuous blog updates! It's helps us Prayer Warriors know what's going on without having to bother folks or get them to repeat things a million times. I know others are strengthened by your faith and that you are strengthened knowing that you are NOT alone in the battle! Hang in there and know that we support you regardless.... Love, The Phil Camp family xxxx oooo

  2. You are so right about the hope and knowing God Heals. We are under a greater authortiy then the doctors at TX Children. They are good but He is the best. I refuse to no pray. I refuse to not expct completel healing. I know God had made plans for Christian and they are to prosper him and not casue him harm. I will continue to pray and expected that God is in control and that He will reveal His plans, His will to us. Until then I am on my knees.

    Loving you and thanking God for the gift of your friendship,


  3. Your faith in God is an inspiration for all of us. I know he has great plans for Christian that are bigger than any of us can imagine. He will meet and surpass the goals that are set for him because he has the Lord on his side and parents who are putting it in his hands. We are praying for you. Christian has been blessed with a wonderful family. The Marvins

  4. As we all go through our day’s … filled with everyday triumphs and tribulations … we are lucky enough to come across a family that inspires us to rise above and look for the miraculous.
    Upfront I must say I have an inherent bias, I am the mother, mother-in-law and grandmother to this amazing family. With that said….
    I am so proud of each of you…
    While we do not always understand why bad things happen to good people we must always look at the bigger picture…
    That bigger picture includes what each of you brings to all of us that are blessed to know you…

    Jack … your unwavering determination to provide and succeed for your family
    Dani-girl … your strength…courage…endurance and commitment to your husband… children… family…friends and church…
    Kyleigh … your huge heart that is full of compassion and truth…
    Jackson … our “angle baby” you taught us that life is short and we must live each day to the fullest …
    Jillian … your unabashed spirit of living life …on your terms…
    Christian… your infectious smile and fortitude to overcome all the limitations that face you…

    I believe that God always holds the “master plan” and we are tasked with believing in it unconditionally……….

    I believe in all of you unconditionally………….

    love you more…
    mom ... mim

  5. You and your family will continually be in my prayers. Always let God take care of you. It's His job, and He will do it perfectly!

    LeAnn C.

  6. Praying for your continued strenght and FAITH. Christian is such a gift and is teaching us all to be stronger prayer warriors and trusting in God's grace, strenght and hope. Love to your whole family. Melinda K.

  7. The Hooks family continued to stand strong in our prayer for Christian. Your family means so much to us. We are here if you need the girls to come over. Now all is well my older 21 has been sick and our thought were for christian. We love you from one mothers heart to another my prayer are crying out to God.

  8. Praying!! Caught a glimpse of C in the nursery on Sunday morning. Such a beautiful baby boy!!!

    Debbie C.

  9. WE are still praying for C and everyone in the family. I have learned as a therapist that "never" is not a word. I have seen some amazing things in the few short years I have been a therapist. Dont give up....keep being the wonderful parents and siblings that you have been.....God is watching and holding each of you in his hands every step of the way and he will never stop. Dont forget the poem "footprints in the sand"....we love you and pray for each of you every day. The Akers and Coldirons

  10. Footprints in the Sand

    One night I dreamed I was walking along the beach with the Lord.
    Many scenes from my life flashed across the sky.
    In each scene I noticed footprints in the sand.
    Sometimes there were two sets of footprints,
    other times there were one set of footprints.

    This bothered me because I noticed that during the low periods of my life,
    when I was suffering from anguish, sorrow or defeat,
    I could see only one set of footprints.

    So I said to the Lord,
    "You promised me Lord, that if I followed you, you would walk with me always.

    But I have noticed that during the most trying periods of my life
    there have only been one set of footprints in the sand.

    Why, when I needed you most, you have not been there for me?"

    The Lord replied,
    "The times when you have seen only one set of footprints, is when I carried you."

  11. Some doctors give hope, some doctors steal them. They are not gods, but they want to give you a reason or answer for things because it makes them feel better. Sometimes doctors just don't have an answer because there is none.

    I was born with a disability (cerebral palsy), and 12 years ago got diagnosed with autoimmune stuff (lupus, fibromyalgia) and the list of chronic health conditions has not ended yet (hip, back issues, heart condition,etc.,). So, please know, I am walking with you in prayer as you start this journey.

    Chari is an extremely rare condition in the world of medicine, and one that can be a lifelong battle. But, Christian is young, and a soldier, with God leading him.

    And Danielle, remember, none of this is your fault. Chari is so extremely rare. No knows what causes it. No one. People with autoimmune conditions, often end up with multiple diagnoses and battles. It is just what happens sometimes.

    God loves you and is watching over you, your husband, your daughters and Christian. He will be there for all of you, no matter what is ahead. He can handle your tears of sadness, your screams of anger or frustration, and even your moments of doubt. He is a Big God, and can take it.

    Hugs and prayers.


  12. Just stopped by to say I read of your little boy on Ravelry and have been keeping him and your whole family in my prayers. Keep strong.
    Many children have amazed the doctors through their own determination and the love and support of their family.