Sunday, February 7, 2010

Neurosurgeon Update

I have some bad news.  When Dylan went to see the Neurosurgeon last week we found out that he will indeed have to have spinal surgery.  :(

Let me back up a bit for those of you who don't know - when Dylan was in the NICU after birth every test in the book was performed on him one of which was an MRI which stated that he had a "mildly tethered spinal cord."  That means that some of his nerves are attached to the vertebrae, which is not ideal.  When I first took him to the Neurosurgeon when he was 8 weeks old the doc told me that newborns have too much fat tissue to truly see a tethered cord and wanted him to have a repeat MRI when he was around 7-8 months old.  So, when Dylan was 7 months he had another MRI and the report stated that the "spine appears unremarkable, and that there are no abnormalities noted."  I took that as meaning that everything was fine and tried many times to contact the doc by phone to see if it was necessary to bring Dylan back for another appointment - he never returned my calls.  I showed the report to Dylan's Pedatrician and she said that based on that report everything looked fine.  But I guess everything wasn't fine.  When the doc took an extra close look at the films he saw that some of Dylan's nerves at the base of his spinal cord are "low" and positioned wrong and need to be moved so that as he grows they won't get pulled and cause nerve damage.  Unfortunately the nerves that are "low" are the nerves that affect bowel and bladder control and walking.  In order for Dylan to have the best chance at walking and being continent this surgery will need to be done.  The doc told us that he wants to given Dylan the best chance at a "normal" life and if any other child had the same problem he would recommend the surgery.  I am just so upset with myself because I thought that everything was fine and  kept complaining about going to the appointment.  I am very overwhelmed with everything that is happening in my life right now and I just hate the thought of my baby having to endure another surgery.  It will be scheduled for sometime in April, I will post an update (I hope that it will not be scheduled on Hailey's birthday).

While I was having all of these emotions (frustration, anger, sadness, etc...) I read a poem that was posted on my friend Jessica's blog(whose son Tanner also has WHS) and I had to post it here to share with my family and friends.  It brought me to tears and reminded me why I was chosen for this special path in life.

Ode to Special Moms

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year, nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation.  As He observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth, son, patron saint, Matthew.  Forrest, Marjorie, daughter, patron saint, Cecilia."

"Rudledge, Carrie, twins, patron saint, give her Gerard.  He's used to profanity."

Finally, he passes a name to an angel and smiles.  "Give her a handicapped child."

The angel is curious.  "Why this one God?  She's so happy."

"Exactly," says God.  "Could I give a handicapped child to a mother who does not know laughter?  That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair.  Once the shock and resentment wear off, she'll handle it."

"I watched her today.  She has that feeling of self and independence that is so rare and so necessary in a mother.  You see, the child I'm going to given her has his own world.  She has to make it live in her world, and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter.  I can fix that.  This one is perfect.  She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"

God nods.  "If she can't separate herself from the child occasionally, she'll never survive.  Yes, here is a woman whom I will bless with a child less than perfect.  She doesn't realize it yet, but she is to be envied.  She will never take for granted a 'spoken word.'  She will never consider a 'step' ordinary.  When her child says 'Momma' for the first time, she will be present at a miracle and know it!  When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.  I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them.  She will never be alone.  I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."
"And what about her patron saint?"  asks the angel, pen poised midair.

God smiles.  "A mirror will suffice."

- Erma Bombeck, May, 1980

Here are some cute videos to end this post of my little miracle:  


  1. I am so sorry to hear Dylan will have to have surgery. There is nothing worse than hearing your baby has to endure more.
    I love the videos! He just melts my heart. What a beautiful boy!
    PS I still have a tear reading that poem, and I have read it so many times!
    Thinking of you
    Anna x

  2. Kristy - I am sad to hear that the little man needs surgery and also sad that you are feeling so badly. I know that all of these doctors visits, diagnosis, etc can really get to us! Praying for some peace for you.

    Also - please do not feel frustrated at yourself about this. The report looked normal and was even stated as normal so how were you to know.

    What was so uplifting about this post - besides the videos was that your doctor said he wanted Dylan to have the best chance at a normal life. That is great to hear a doctor wanting the best for D and expecting that he will walk or at least giving him the opportunity to do so.

    How is everyone feeling since the accident. Is all the insurance stuff figured out. Hope all is well!

  3. I am really sorry to hear what you are going through, and that Dylan has to go through surgery. Surgery is never easy, but as Lauren said, its great that this doctor is giving the best opportunitys through this surgery. You are in my thoughts...

  4. I'm sorry to hear how overwhelming everything is right now. I had been hopeful for you that the neurosurgeon appointment would simply be an inconvenience. I know you weren't expecting news like this. Dylan and your family will be in my thoughts and prayers.

  5. Hi you guys, We're really sorry to hear that little pickle has to have surgery. That poem was spot on! You are the perfect mother(& father) for this little guy! The Poem---how true. You are one that knows laughter, feeling of self and independence!!! Love you all, Proud Aunt Joanne

  6. Kristy,
    I just found your blog, and I am so sorry to hear that your little guy needs to have surgery. I am glad that I read this entry, though, because Kaylee had a spinal MRI performed a few days after birth and I, too, was told that everything looked normal. Now I know to make sure that there is a follow-up MRI performed a few months down the line. You and Dylan are in my thoughts and prayers.


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