An Update

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We’ve written about our superhero before on this blog. It’s our favorite description of our little guy. I love the shirt I found him for Christmas pictured above. You can’t see, but it has a little cape Velcroed to the back. So cute.

My hero, my superman, my little boy.

I guess every superhero has a weakness: Superman had his kryptonite after all. All superheroes have a nemesis (or two) to fight as well. With all the things stacked up against them, it’s a wonder those superheroes ever make it at all.

Elijah has had a lot of medical issues lately (too many to list), lots of hospital visits and many different doctors looking after him. So many issues, in fact, that we decided to get an MRI in mid-December on his brain and spine to check if anything had changed.

It had. A lot.

Elijah’s brain and spine have both sustained significant damage. The damage is similar to a global stroke, so similar that the physicians here in town thought he had had a major stroke, which would be accompanied with an event of oxygen deprivation. The doctor compared it with what near drowning victims experience in their brains after going several minutes without oxygen.

But that wasn’t it.

As far as we knew, Elijah had never had an event of sustained oxygen deprivation.

Elijah’s primary neurologist took a look at the MRI and called us a week and a half after the MRI was done. He believes that Elijah has not had a stroke but instead his brain is damaged from the effects of a mitochondrial disease. The damage is similar in that brain cells have died, but affects different parts of the brain than a stroke would.

Mitochondria are the parts of our cells that give energy or fuel to our cells. If there is something wrong with the mitochondria, the cell suffers and dies. It is a metabolic disorder, meaning that there is something wrong with the way Elijah’s body metabolizes food. It is a genetic disorder and there is no cure.

This would explain why Elijah has deteriorated in his status and functions. I won’t go into great detail about what has happened in Elijah recently, there’s a lot to it and I won’t take the time to explain here. Our most recent visit to St. Louis Children’s Hospital brought light and clarity to his condition.

Here’s a summary:

Elijah’s condition is metabolic and therefore progressive. This means that he will most likely continue to deteriorate and lose functions.

There are medications that are available but unlikely to work due to The progressiveness of Elijah’s condition.

Elijah is not a candidate for surgery. Any surgery that Elijah would have would only relieve his symptoms, it would not fix anything. So, the risk of putting him through surgery far outweighs the benefits of any surgery. The stress on his body would put him straight into the PICU and most likely on a ventilator. The chances of him coming off of the ventilator would be unknown.

Due to the information above and our desires for Elijah and our family, we have decided to move Elijah’s care to the home. Our goals are to keep Elijah comfortable and to stay at home as much as possible. Putting Elijah through pain and discomfort to attain little if no benefit is not what we desire for Elijah, especially in light of the progressiveness of the disease. We also prefer to be at home, taking care of Elijah on our own and in our own way. We do have hospice nursing supporting us with supplies and resources.

It’s a good thing superheroes have super powers.

Elijah’s super powers are the prayers of God’s people lifting him and his family up during a very, very difficult time. Please, please pray. We are so desperate for your prayers. We love and appreciate all the gifts of food or money or deep freezers or house cleaning. But we would exchange all of that in a second for more of your prayers for Elijah.

As you can tell, we’ve sat on this information for a couple of weeks. We’ve had a surreal experience processing it and are still struggling with the reality of Elijah’s prognosis. As you pray for our family please keep this Scripture in mind:

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. (2 Corinthians 4:16-18 ESV)

We don’t know when Elijah’s days are finished here on earth, anymore than we know when your or my days are finished. Every day we get closer to the end of our temporary life and the beginning of the eternal one.

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21 thoughts on “An Update

  1. Mary Odell says:

    Still praying for you guys and your super hero

  2. Colleen Spurgeon says:

    Becky, I’ve been praying and will continue to pray for your
    little man and for you and your family to have strength. I’ve
    shared your story with some other friends of mine who are praying
    too. Giving you a BIG hug and sending you my love and prayers!!
    Praying, Colleen Spurgeon

  3. Kristi Lundgren says:

    James 1:2-4,12 (MSG)

    2-4Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don’t try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in any way.

    12 Anyone who meets a testing challenge head-on and manages to stick it out is mighty fortunate. For such persons loyally in love with God, the reward is life and more life.

    Becky,

    Our family continues to pray for you. Please know that when you are at your weakest, unable to pray, unable to process, unable, perhaps, to feel anything at all…..there are in those times, undoubtedly, many, many people standing in the gap for you. I thank God for His strong grip. I know you are holding on tight to your Savior. I know more than that though, He is holding on to you….each of you. I pray grace that is sufficient…..for every trial you face in this journey with your sweet Elijah. Even though we don’t “know” you, we are praying for you and we love you.

    Love,
    Kristi Lundgren

  4. Jennifer says:

    Chris and Becky,

    I grieve the news of the latest doctor’s findings with you. This is not at all how I pictured your experience to be when you shared the news that this sweet boy would be joining your family a little less than two years ago. And yet as tough as the circumstances are, I choose to join you in looking past the storm and directly into the Savior’s eyes. I appreciate you letting us know exactly what you need and want most…prayer. I have often felt bad that I was so far away that I couldn’t “do” more for you. I realize now that what you need most from me is to pray. I commit to increase my dedication to pray for your superhero and sweet family. Love you deeply my friends!

  5. Tara Ecklund says:

    Becky, I am so sorry for what you are going through. You
    and your sweet family are in our prayers.

  6. Rick Fox says:

    Becky & family,

    We are praying fervently as you endure this tortuous situation. It is very evident that God is carrying you and your family. Robyn & I had dinner with Dave & Melissa last night and they are amazed at the strength you & Chris possess through your faith. I also pray fervently for them as it is very difficult for them living so far away from you. We are all thankful that you have thousands of prayer warriors lifting the Lil’ Superhero and his Godly family. May the Lord bless you & keep you.

    Blessings,
    Rick

  7. Mike and Reba says:

    Hey guys, Mike and I are so saddened to read of this
    report! We are teaching kindergarten Sunday school at the church,
    we have Elijah Michael on our prayer list. We will continue to pray
    for peace, comfort, for you and your family. May the Lord bring you
    peace beyond any understanding. Mike Reba, and the kindergarten
    class from first Assembly Bartlesville ((((hugs))))

  8. We are praying and will spread the word to family and
    friends to pray as well. Love you guys, Tina Norman

  9. Jeni Huelskamp says:

    Becky, I am Jeni Huelskamp. You probably know my kids Ben
    (intern) and Grace (student leader). My first born daughter,
    Elizabeth, was born with many special needs. They gave her one
    year, and we lost her just after her 3rd birthday. Ben was 9 weeks
    old. We have been exactly in the shoes you are in. I just wanted to
    let you know we are out here, we are praying for you, and I am very
    open to talking if you ever just need to talk with someone who has
    been there. I am so sorry. I wouldn’t change my history for
    anything, Elizabeth made me who I am today. And I look forward to
    the day I get to see her again with an anticipation many may not
    know. Blessings to you and your family.

  10. Cynthia Murray says:

    You are doing the right thing. I am a complete stranger and
    found you only because we have friends with a grandson with the
    same diagnosis. You and sweet Elijah certainly have my prayers as
    you navigate the coming days. Your faith will get you through.
    Savor every moment and be grateful that you KNOW you will be
    together again.

  11. Sandra Cloud says:

    The Clouds are praying for you.

  12. Judy Poland says:

    Becky and Chris, this song comes to mind when I think/pray
    for you all. My heart hurts. We are praying. I was at a concert
    that Casting Crowns was doing and they said they wrote this song
    for a mom who was losing their child. This mom was so courageous
    and kept God first, even when things where so dim. They said she
    actually laid her Bible on the ground and literally stood on the
    Word of God. I know words are so empty, there really is nothing we
    can say, but we are praying to a God who holds every tear that is
    shed. Love you guys, Judy Casting Crowns: Praise You In This Storm
    I was sure by now God You would have reached down And wiped our
    tears away Stepped in and saved the day But once again, I say
    “Amen”, and it’s still raining As the thunder rolls I barely hear
    Your whisper through the rain “I’m with you” And as Your mercy
    falls I raise my hands and praise the God who gives And takes away
    [Chorus:] And I’ll praise You in this storm And I will lift my
    hands For You are who You are No matter where I am And every tear
    I’ve cried You hold in Your hand You never left my side And though
    my heart is torn I will praise You in this storm I remember when I
    stumbled in the wind You heard my cry to you And you raised me up
    again My strength is almost gone How can I carry on If I can’t find
    You But as the thunder rolls I barely hear You whisper through the
    rain “I’m with you” And as Your mercy falls I raise my hands and
    praise the God who gives And takes away [Chorus] I lift my eyes
    unto the hills Where does my help come from? My help comes from the
    Lord The Maker of Heaven and Earth

  13. Haley says:

    I don’t know you, but my heart is grieving for you. I will
    be praying so hard for your family. May God bring you comfort and
    peace and also have His glory by bringing miraculous healing to
    your baby boy!

  14. Jamal Fletcher says:

    I would like to thank you guys for showing exemplary faith
    through this. I’m sure writing these words is not easy nor can your
    situation be so easily explained. But your guys’ ability to stand
    firm no matter what amazes me. Know that there is a family in New
    Jersey lifting you guys up in prayer.

  15. Jan Willaford says:

    To my sweet “kids”, You two have been given a precious gift
    and you are running the race with love, compassion and God! I don’t
    know the future but I know to Whom we trust! Know that God is
    waking us up to pray continually for you. No words are adequate at
    this time. Love you!

  16. Brandi Green says:

    Dear Becky, You may not remember me as you have only saw me
    like two times (I am Brandon’s wife). However, I feel the need to
    share with you my thoughts. Everytime Brandon tries to give me an
    update on your son, I would always tell him I didn’t want to hear
    it, this was because it broke my heart too much to hear about. I
    couldn’t stand the thought of the pain and heartbreak that you and
    your family were going through. It just didn’t seem fair, and not
    that your son is suffering but for the fact that I feel bad that
    God has blessed my husband and I with four beautiful and healthy
    children and your son is so sick. I do pray for you and your family
    and when I do, I often find myself questioning God. I ask why I was
    so blessed and yet I am so undeserving of the blessings he gave me.
    I felt that you and your husband were more deserving of having
    healthy children than I ever could be. You and your husband walk a
    closer walk with the Lord than I do. I smoke and have with each
    pregnancy and you, I know did not. I am a Christian but I find my
    self back sliding more often than I should and I feel that you and
    your family are a wonderful Christian family, living and setting
    examples for others to follow. Yet you are the ones who are
    struggling so much and I still feel as if it should be me for the
    way I am. But then something changed in me and it made me see that
    God has given me these blessings becuase he knew I needed them as
    much as they need me. Elijah was placed in your care by God because
    he knew you were the right mother for him to have, a mother that
    never gives up nor let’s the situation get her down. You have
    managed to keep going no matter how tough it has been and that in
    itself is a blessing. Then I think of when your kids grow up how
    they would both be wonderful giving adults, how they would go out
    and be a light to others and let God’s love be seen through them
    because of what you have taught them. Although, Elijah may never be
    able to go out and be that light, he is a light right where he is.
    Elijah has touched more lives than what anyone could imagine. He
    has been a blessing all along. He worked through you and your
    husband in the only way he was able, he has been able to touch
    lives not only in the hospital but everywhere that he has been as
    well as everywhere you and your husband have been, your strentgh
    and attitude have set an example for everyone you all have come in
    contact with. We don’t know what God has in store for you and your
    family to come, I am optimistic and I know that no matter what a
    doctor says or what test results reveal nothing is certain and God
    can do anything. I think of Elijah and your family all the time and
    I just can’t read the medical updates, I know Brandon said you all
    are going home and hospice is there to help, however I still want
    to believe that a miracle can change those circumstances. Your
    husband is right your son is a “SUPER HERO” !!! He looks so
    handsome and tough and has went through so much in just a very
    short time, more than I have ever went through in my 29 years and
    that is such a great strength. I would love to meet Mr. Elijah one
    day because he is a miracle baby and has sure imapcted my life.
    Keep your head up and keep up the good work of being a wonderful
    Mommy, you are blessed and I know the Lord will continue to bless
    you through the years. Love, Brandi

  17. Tony Hankins says:

    Chris and Becky, I am praying that God will give your son
    healing! And that during this very difficult time that he will
    continue to give you strength. My hear goes out to the both of
    you

  18. Stephen Garcia says:

    Chris, You don’t know me but my name is Stephen Garcia. I’m
    a youth pastor in the Springfield area and I’m also good friends
    with Steve Svoboda. He notified me of your sons condition and gave
    me the link to your blog. Words can’t express how much I respect
    and honor your faith during this time. Just reading your blog
    brings me to tears. Know that My prayers are for you and your
    family. I stand in faith with you as you go through this difficult
    time and will alway hope for the best. Much love!

  19. Savannah Elmore says:

    Hey guys I just wanted you to know. I have and will be praying for you everyday.You both are an amazing insparation for me and my walk with christ.

  20. Melia Thompson says:

    Chris and Becky – I came across your blog while on Facebook. I attended Evangel University and have friends that have been asking for prayer for Elijah through Facebook and have shared the blog. I have spent an hour of more crying and praying while reading your post. I have a 2 year old and cannot imagine the pain you and your family are experiencing. However, I do know that we serve a big God and that miracles happen when we pray and praise him! Keep the faith! My family and I are praying for you – all the way in West Virginia. My church family is praying as well! God Bless!

  21. Emma Shelton says:

    Chris and Becky- just letting you know that my family and i are keeping you and your family in our prayers! we all miss u at church!!!!!! love you guys! youre the best!!!!

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