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Tuesday, January 15, 2013

Urgent prayer needed!!!

Hi guys. As many of you know Finley has Spina bifida but has no symptoms related to her condition. One if the things we have to watch for is a thing called tethered cord. That basically means our spinal cords should float in the spinal column freely and as you grow etc. it just floats freely. In people with finleys type of Spina bifida there is fat that runs like a ribbon inside the spinal column and the cord attaches to the fat and when you grow you run the risk of the spinal cord stretching like a rope and since its attached to fat and not free floating, it will (as an example) fray like a stretched rope. When this happens the kid runs the risk of losing function (mobility, continence etc.)

When we brought Finley home they did an MRI and she looked horribly tethered in the MRI and the tossed around the idea of doing surgery right away. The conflict came because she did not show any symptoms of being tethered (her cord being attached to the fat in her spinal column) so they decided to hold off on surgery until she shows symptoms. We were always told the most risky times for tethered cord is during the growth spurts as that's when the tension is put on the cord. Some kids have to have surgeries to detether their spinal cords and about 70% of lost function is often returned but sometimes they lose the lost function forever. We were told to watch specifically for lower leg function and urine continence as the first things that often become impaired.

Finley has been growing like a weed but has always been totally without any symptoms. On Saturday we noticed that she started limping- an odd limp but nonetheless a limp. She said she didn't do Anything to her leg so we
Were kind of baffled by her limp. We assumed it would go away. Unfortunatly, each day the limp has gotten worse and last night I noticed she has wet undies in her laundry. When I saw that my heart just sunk realizing this is probably tethered cord. I then talked to Kim and she had noticed a few days ago she had leaked at Kim's house too. Then this morning kevin checked the sensation in her feet and they are essentially numb. He dug his nails into her feet to see if there was any sensation and there was nothing. All of these things made us realize what this most likely is and we called the Spina bifida clinic director and she was worried and well and since we have an HMO we had to have the primary doctor make the referral to see the neurosurgeons and have a new MRI. They wanted the referrals to me made as urgent. We had the referrals approved within an hour and I was rapidly making appointments until kevin called and said she was in a lot of pain. I mentioned this to the neurosurgery scheduler and she said that she would suggest taking her to Er and as a bonus her neurosurgeon that we always see is the dr on call so he would see her and this would speed everything up and essentially decrease the risk if lost function.

So we are in Er waiting to go back. Finley seems scared and her pain is not horrible unless she moves her leg weird. I will update everyone as I know more. Please keep her in your prayers. Specifically that she will not lose function.

Thanks guys and update you soon.

Christy :)


12 comments:

  1. Praying for complete recovery for Finley!

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  2. Christy - Will lift Finley up in prayer tonight. My thoughts are with you guys.
    Sophie

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  3. Praying for your sweet girl and for you all as well. Our Janie does not have spina bifida but imperforate anus and had tethered cord surgery in August and is now potty trained for urine. It is always confusing to figure out the degree of tether and how detailed the surgery will be but Janie was in the hospital for 2 days and did very well. I know you all are scared and unsure. Please know that we are praying for you and for wise decisions by the doctors. Hugs!!!!

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  4. Oh sweet baby girl! Praying for healing and wisdom in any decisions that need to be made!!!

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  5. Christy, We are praying for Finley and your family. xoxo

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  6. Christy...praying for sweet Finley!!! xoxo

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  7. Praying for peace for mama, courage for Finley, and wisdom for the docs.

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  8. Christy so sorry to hear your darling baby is in pain! I pray that they will be able to asses her quickly and be able to take care of her. Pray she will not lose mobility in her legs and can return to her life as a happy little girl. Hugs from Atlanta!

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  9. Praying for your sweet girl and family!!! My thoughts are with your precious family!!!

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  10. Praying for Finley! Hope it's something minor that can be easily fixed.

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  11. I will keep Finley in my pray.

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