Thursday, July 9, 2009

Relieved...a little bit...not really sure what to feel...

I am crying...happy and sad...had our MRI this week and just consulted with the pediatric neuro specialist. He compared the original films to the new films taken Tuesday morning and I am happy to report the brain and spine are CLEAR of any neurological deformities...NO TUMORS...NO BLOCKAGES IN THE BRAIN. However, we do have a definitive diagnosis: Syringomyelia. Syringomyelia (SM) is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying the center of the cord. Since the spinal cord connects the brain to the nerves in the extremities, this damage may result in pain, weakness, and stiffness in the back, shoulders, arms or legs. Other symptoms may include headaches and loss of the ability to feel extremes of hot or cold, especially in the hands and disruption in body temperature. So...those are our facts. The syringomyelia, however slight right now, is not causing my little guy any pain. I am going to need some time adjusting to this diagnosis. Still feeling very (personally) overwhelmed and sad that this is what Zachary's life is going to be about. I did learn when all this came up last month that, yes life DOES go on and I just have to take each day as it is given to me and to accept that God has His plan for us and will carry us through it. No Mom ever wants to think her kid is in pain--THAT, is what is eating me up. In the mean time--we still need to deal with the Infantile Scoliosis (IS) diagnosis and are going to see another specialist (a peds ortho specialist) up at Seattle Children's. He/she will have to determine if Zac's scoliosis is Progressive (IS) or not and prescribe Courses of Action for us. Hopefully we can get an appointment before too long as Jeff's school is on hold and he feels very anxious about how his leadership will interpret/react to this news. Its hard for me not to react emotionally to this knowing the sacrifices our whole family has made for the military but again--I'm trying not to project, keeping it in the moment and GRATEFUL for the support, love and prayers of all our friends, family and others. I'm not up for chatting--need to work on accepting this...will get there and will return calls and e-mails shortly. LOVE and THANKS to all. J, J, K & Z-Man

5 comments:

  1. Praying and hoping your able to sort through these feelings! Please give me a call if there is anything I can help you with or if you just need someone to talk to!!

    We love and care about you! Praying always!

    The Hartung Family

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  2. We are so praying for you all, Jen! And SO thankful that these are NOT tumors! Let us know if we can help you out with anything between appointments -- meals, anything! We love you and love your little boy!!! Love, The Cuthrells

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  3. Our thoughts and prayers are with you all! VERY glad Zac isn't in any pain...and hope it continues to be that way forever!

    Thanks for keeping us informed and please let us know what we can do...we are here!!

    Lotsa love,

    Sean and Courtney Lynn

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  4. Hi Jenn,

    I am so thankful and relieve to hear it´s no TUMOR. I had a overwhelming feeling everything will work out and now I know Zack will be fine!

    You are in all our prayers
    I miss you a lot !

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  5. Praise God! Thanks for keeping everyone in the loop! We will continue to pray... pray for Zac and for the whole family. No mommy should ever have to watch her baby suffer... but have comfort in knowing that God has never stopped holding Zac's hand (or yours) during all of this and He promises to be by your side till the end!

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