Sunday, January 8, 2012

New Diagnosis, the one we feared

On November 1st Lily had a muscle biopsy along with her g tube and iv port placement. We have been holding our breath for the results hoping for an answer to why Lily has had so many complications. The biopsy would tell us if she had something wrong in her DNA or hopefully rule out some very scary, very serious life changing and life ending diagnosis'.

Friday morning I woke to the phone ringing. It was the Nurse from the neurologists office calling to tell us they got the biopsy back. The doctor wanted to see us to explain the results but she could tell me that the results said "suggested Mitochondrial disease". My whole world came crashing down in one instant. I couldn't breathe.I wanted to scream, to run as far away from this information as I could. I wanted to UN-hear what I had just heard. I knew what this result meant. I had done hours and hours of research. I had suspected this disease, but it was the one I feared the most. I also knew that this result alone wasn't always enough to diagnose her but added with all her other diagnosis' and the fact that her serum ck levels were elevated.... It couldn't be anything else.

Mitochondrial disease (Mito) affects the bodies ability to convert food, vitamins, etc. into energy. That energy is what makes our brain function our heart beat, our skin grow, our muscles stretch and contract. EVERYTHING in our body requires energy. Mito patients don't produce the energy needed for their body to function properly. That is why she has so many seemingly unconnected diagnosis'. Mito is progressive and gets worse, and worse over time. There is no cure. The only treatment is special vitamins and treating individual symptoms as they occur.

The prognosis is different with every individual, some children live to be 2 or 3, some live to be 25 or older.  But as is the case with every progressive disease, the disease eventually wins.

I have had a few months to prepare myself for this I knew it was a possibility, but to have the possibility realized is crushing at the very least. I don't want this! I don't want to see my child get sicker and sicker until she can't fight anymore. I want her to LIVE. I want her to have all the things a parent naturally expects for their children. I want her to eat food. Drink water. walk, run, skip and play. I want her to be able to get a mild fever and NOT have it be life threatening. I want her to grow up get married have kids and see her Grand kids.

I am NOT without hope however. Not all of the things I want for her are lost forever. She could walk, might even run. She might one day be able to eat. I will search for a cure. We will go wherever the doctors who specialize in this are. Plus, I KNOW through God ALL THINGS ARE POSSIBLE! He can heal her IF it is what He chooses to do. Just Like Jesus healed so many while He walked this Earth, She could be healed. I can only have Faith and pray for her and then accept Gods will WHATEVER it may be. I trust Him with all my soul. I will put my Faith, hope, and her life in his hands.

9 comments:

  1. well, I tried to post a comment a couple of times...we love you. I too believe that miracles can and do happen. You are the best mom ever..and you are holding the most beautiful miracle of all. You are in our thoughts and prayers and in our hearts. hugs~

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  2. What a BEAUTIFUL testimony in the mist of this SAD OVERWHELING news. I have cried for you and with you. We read this as a family. as always our LOVE, PRAYERS AND HUGS WE SEND TO YOU.

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  3. I love you 3 so very, very much. I have Faith and will continue to pray for you guys, always. I'm here, always :) I haven't been able to stop thinking about you 3. My heart is broken. We think of Lily as our adopted neice who we love so dearly. We will do whatever we can to help you! Anything, anything at all. Hugs and love. Rachel and Matthew and boys

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  4. I am so sorry to hear,but just have faith that she will live a long life and cherish every moment you have with her. she is a beautiful child and you were blessed with her for a reason. Im praying for you and your family

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  5. That sweet Lily of yours is a miracle child. The people she will affect in her life will be great. SHE has an amazing mommy and daddy. In fact, she has the best mommy and daddy for her through this ordeal. She has an amazing spirit. We love your family and are praying for you as well.

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  6. I don't even know what to say... I'm so sorry Alix. We love you guys and please know we are always here for you guys! Anything you need at all please just call! Thank you for your strong example and faith! You're an amazing mom! -Liz

    Hope! Heavenly Father can do all things! When you pray, remember that you are not praying alone, we are praying with you! We love you! If a family ever needed and was worthy of a miracle, it is the Jakeman family! -rob

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  7. Praying. Please see this: http://www.youtube.com/watch?v=_e4zgJXPpI4

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  8. I served with your husband in Zimbabwe. He was a wonderful, faithful elder with a very tender heart. He had an ability to love members and investigators with a pure love that not many missionaries had. His testimony was simple and strong. I looked up to him in many ways for his quiet faith. I am so sorry to read about the trials the two of you are facing right now with your sweet baby girl. She is a beautiful baby and I know that regardless of the outcome your family will be blessed because of the eternal covenants made in the temple. We unite our prayers with yours in behalf of your sweet Lily and hope and pray for the very best for your little family.
    Faithfully yours, Natalie "Watts" Gardner

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  9. Hey, Alix. I saw that Rachel had posted something with a picture of sweet Lily, and I was glad for a chance to see how the little angel was doing. And then I read the update. :(

    I have a gift for sicking my foot in my mouth, but I'm going to try my best here.

    It all just really hurts to hear. Everything. And you are so sweet and wonderful as your world falls apart, but nothing takes away from the fact that life can really be a monstrous torturefest. I'm not going to say I know how you feel because I don't. I can barely work up the nerve to try and imagine. Even thinking about what kind of service I would want if I were in your shoes proves difficult -- I don't know what any person could do to alleviate the pain. I can only acknowledge that the pain is there, that I am feeling it with you, that I am crying for your baby with you, and yes, rejoicing in eternal plans and the joys you do have, but aching for your here and now. I know it isn't much, but I am praying for your family. Love to you all.

    Leah

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