Sunday, August 23, 2009

Should I be worried that 2 doctors at our military hospital and 3 doctors at Seattle Children's Hospital didn't catch the two NEW disorders that our "second opinion" doctor (in Utah) told us about on Friday???? Seriously?! So the phone call I was waiting for anticipating some treatment options ended in a diagnosis of Spina Bifoda Occulta and a tethered spinal cord...which means he can't treat Zac for the scoliosis until the cord is untethered!!!! THAT IS SURGERY:( Jeff won't even talk to me about this because he refuses to get upset about a prognosis that doctors can't agree on. After our tumor scare, I understand but....so back to "square one"...asking our specialists to REVIEW the MRI/X-Rays to confirm...or deny (I hope) this new diagnosis! What sucks is that if the new Doc is wrong...do I want him to treat Zac??? His reputation is amazing....okay, one day at a time. Put in a telephone consult to Seattle; average time to hear back is 2 weeks. LOVELY. In the meantime we have an appointment on 26 Oct for genetics testing another X-Ray. Am so sad and frustrated! If Zac has this tethered cord, he will start manifesting symptoms with the next few growth spurts. Not sure how docs determine when surgery is "appropriate". I know one thing, this patience God is giving me WILL NOT last if my baby is in pain!

4 comments:

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  2. We are praying for you all and continually hoping those Doctors all work together to get Zac what he needs. Always in our thoughts!!

    Sean and Courtney

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  3. Just checking in to say hi and we are thinking about you all!!

    The Lynn's

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  4. we are taking Izabell to get a second opinonin Philly at the shriners hopital at the end of Oct. I hope that you guys are getting some answers and have support while you wade though your choices if you need anything even just a person to vent to please email.. wyndilee@yahoo.com

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