Posted in Family, Jessica & her heart

Jessica Update – Risk of Paralization

jessica2009
Jessica ~ New Years Day 2009

My husband & I along with Jessica kind of hit a low today.  It’s not that we doubt that God cannot change things around.  It’s not that we doubt the miracle that took place  saving her life just two weeks ago today, but it’s getting back to “normal” and knowing for Jessica, it won’t  all be normal.  Both my husband & I spoke with the orthopedic surgeon today, and the serious concerns regarding her neck and spine remain.  Until she has an MRI we will not know the extent.  The “good” is that the nuclear bone scan she had while in the hospital shows her bones are not deteriorating.  The x-rays however showed, she has a weakness.  I do not know all the terminology at this point.  It’s a lot to soak in.  But as we were told while she was in the hospital, she has Klippel-Feil Syndrome.  Vertebraes C-2, 3, & 4 in her neck are  fused together – which grew this way from before birth.  The main concern the risk now between vertebraes C-1 and 2.  It is not stable – but to what point, we do not know.  Because C-1 is connected to her head  and C2, 3, & 4 are fused together, there is the instability between the C-1 & 2.   She also has the hemi-vertebrae in C-7 which is 50% missing and also somewhat fragile.

In talking to the orthopedic surgeon today, which we had to talk to Jessica about today, she is to be very limited in “playing”. There is no more roller blading, skateboarding, jumping on a trampoline, contact games, amusement park rides, diving, wrestling, jumping off the swing while swinging high, dodge ball, sledding with other kids/trees around (she can sled down a hill, if there is no one to bang into and no trees in sight).  Any major blow to her head, could paralyze her.

So, where is the bubble wrap?

My heart is just breaking for her.  She wants to be a normal child, having fun, not worrying about breaking her neck.  We want her to be a normal child.  But, her normal, is not going to be normal.   Her siblings are going to be worried . . . and the thought of one of them just having fun and accidentally hurting her . . . oh, I do not want one of them carrying the guilt of hurting what is already half broken.  She does not want to be treated differently and does not want her friends thinking she is so fragile.

I know in my head how God so precisely took care of her – I know He has a plan for her and wants her living.  I know His ways are not mine – I just pray she is never paralyzed. My heart hurts and asks the whys . . . again.

We do not understand the details yet, and we wonder probably along with you – why not just get it fixed. A neck/spine surgery is major, and there is major bleeding with it (and she is on coumadin to prevent blood from clotting in her mechanical mitral valve).  Also, the orthopedic surgeon said she may have been at the state she is in now, her entire life – we do not have anything to base it on if it has gotten worse or not.  She will need it fused at some time, and then at that point, she will have very limited (if any) mobility in her neck.

So, I am asking for prayer for all of us – prayer for peace.  Jessica was very sad when we had to be honest and explain to her.  She cried.  We cried with her.

We have a post-op cardiology check-up Monday afternoon and we anticipate that going well with her heart, and we know her cardiologist can give us some direction as well, in what to do next regarding her back. The main concern is when an MRI can be done.

Please pray for a hedge of protection around Jessica and a peace for her and our family.  She does not want life to be “boring” as she said.  She’s a kid.  It shouldn’t be.

Author:

Beloved KEPT Child of Jesus stumbling by faith ~ Married 33 years ~ Blessed Mama of 10 beside me & 2 at Jesus' feet ~ Homeschool mama of 26 years ~ Writer * Blogger * Reviewer ~

10 thoughts on “Jessica Update – Risk of Paralization

  1. Prayers have just gone up. I am so sorry to hear about your daughter. I know it must be hard on all of you. I will keep you in our prayers. Keep us postedl
    Blessings,
    Michele

  2. I’m sorry, I hit the wrong key and it said it sent my email already… I just want you to know you are all in our prayers. blessings to you and your family.

  3. I’m praying for you and your Jessica. Don’t give up hope. God does have a plan, I know it! God bless you!

  4. Loni,

    I’m so praying for you and your precious, sweet girl, Jessica. May God bring precious healing to her fragile body and restore her fully to health, joy and her childhood! My He grant you peace for the process, wisdom for the journey ahead and His loving embrace to be felt around Your entire family as He hems you end from behind and goes before You in truth. Many blessings, friend. Love, Michelle

  5. My heart hurts for Jessica (and for you as her mother). I can’t help but think though that God has a special plan and he won’t let her down. He will give her special grace for this situation. He will teach her precious lessons from her trials. He will always be there with her to endure her heartaches and disappointments.

    Yet, my heart is tender for her and I do have great sympathy for you all in this situation. I’m sorry.

    Love,
    Lynnette

  6. Oh Loni,
    We have been praying right along with you, and today my heart hurts too for Jessica and for you as her mom. Your faith and trust is all God asks at this time…..He will provide the rest for you, her and the rest of the family. I HAVE TO BELIEVE that! She is at a tough place, but with prayer and perseverance she will learn God’s plan, although it’s slow…

    Prayers for PEACE, the peace that surpasses ALL understanding and blessings in abundance for you all.

    Peace Loni, and I can only hope that you all feel the prayers said many, many miles away….allow them to HUG you.

    lori

  7. Hey Loni,

    I’m just so sorry to read this news. I know as a parent what’s it’s like to get such alarming news, and all those “what ifs”.

    I know in time God’s grace will catch up with all this information you have received and you’ll walk in peace that passes all understanding.

    God has a mighty plan for your precious Jessica. Watch and see.

    My husband broke C-1/C-2 when he was 18. Technically he should of died instantly. It was a bad break, in a diving accident. He also should be paralyzed! But God did a miracle. He does have a wire wrapped around C-1-C-4. He was in the hospital 6 months back then. It was like in the Joni movie, same surgery to fuse bones, and put on those tongs, etc. Anyhow, that was many years ago. He was warned not to do anything in sports, etc. Being a stubborn teenager, he didn’t always listen. He’s fine now. God’s protection has been over him. He over came epilepsy too as a young child.

    I pray this will encourage you now. Nothing is too difficult for our God, you’ve witnessed that time and again.

    I’ll keep Jessica and YOU in prayer as the days go on. We love you all.

    Susan

  8. We are praying for y’all and Jessica, and can’t imagine what y’all are going through! Praying God’s peace will surround you at this time! With Love,
    Hannah Walsh

  9. Please know we’re praying for Jessica and for your family. I’m so sorry but I’m trusting God in this for ya’ll. May He put that hedge of protection around her and guide you in wisdom as you seek the best for her.

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