Not a Good Day

Visit This Link A few months ago Kimbell’s left eye started drooping.  Of course K didn’t say anything but John noticed.  They thought it was a tumor but it wasn’t for which we are thankful.  We came to MN last month for her annual transplant visit and ran a ton of tests on her immune system, bmb, mri, pft’s etc.  Everything came out looking good but still no answer for the ptosis (drooping eyelid).  On Wednesday we flew back to MN to see a neuro ophthalmologist.  We were quite anxious b/c this guy was supposed to know it all.  🙂  Dr. Lee is awesome.  He did so many tests and kept K happy, joking all the way.  We thought we had ruled out all the bad stuff but we were wrong.  Apparently one of the diseases we thought was ruled out, well as it turns out the test isn’t very valid.  When it is negative but you suspect the disease is still there – you do an ice pack test.  He put an ice pack on K’s eye for exactly two minutes.  When he took it off her eyelid was normal.  She was so excited “I can see everything”.  Unfortunately the effect only lasts about a minute.  So this ice test is more accurate then the blood test!!

more Kimbell was diagnosed with a progressive neuromuscular auto immune disease.  Turns out symptoms we were blaming on lack of exercise due to Graves and being run over by the car are due to this new disease.  One percent of people with Grave’s disease get diagnosed with this.  Less than 10% of people with this dx are children.  K really hit the jackpot this time.  There is no cure and to be honest we don’t really understand it all.  We are waiting on BMT to approve the first drug but typically you need this and another drug (typically anti rejection meds) to control the disease.  The problem with the anti rejection meds is K’s kidneys went into moderate renal failure during BMT and we had to pull her off early so I’m not really sure how all this will work.  It appears that a new team will have to manage this is coordination with the transplant team and her pediatrician.  Have I said how lucky we are to have her ped?  I emailed her yesterday just well upset.  She emailed me back twice yesterday.  God bless that woman, she has been through so much with us I don’t know what we would do without her.  Anyhow all we know right now is that she will most likely start having double vision, weakness and trouble swallowing.

Please say a prayer for K.  She is such a stoic kid but this isn’t lost on her.  I love how her sarcastic humor comes out when she is stressed but it is usually just a comment here or there and that is it.  Yesterday her comment was “Really mom 1% really do I have to be 1%?”  Kimbell never really talks about how she feels emotionally or physically and I know this latest news hit her hard.

 

Love,

Paige, John, Kimbell and Stitch

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