BMT 4 yr anniversary, K turned 14 and a never ending puzzle

On July 2 we celebrated K’s 4th Re-Birthday in Alaska.  Every year is truly a blessing.  K seemed to have a rough time this year on our annual trip and tired quickly.  We came home to a slew of tests and it was confirmed that she has generalized myasthenia, inflammation in her intestines and something with her enzymes in short a lot of new medicine.

Last week we celebrated her 14th birthday!  I cannot believe our little girl is 14 and a freshman in High School.  It all seems surreal.

On Friday Kimbell was admitted to start a high dose of IVIG for her neuromuscular disease in hopes that it would stop the progression and help her feel better.  She got the first dose of 65 grams Friday night and the second dose of 65 grams Saturday night.  5 IV’s later we got discharged on Sunday afternoon.  Just as I’m drifting off to sleep she comes in and tells me she can’t handle the pain in her head.  So off to the hospital we go.  We’ve been here ever since.  They have pain management involved and have given her a lot of medicine but she is still throwing up and in a lot of pain.  Typically in the old days of IVIG the headache wasn’t as severe and only lasted two days but this doesn’t seem to be subsiding at all.  To add more questions K’s nose started bleeding profusely last night and again this morning.  You would have thought we were in the old days before and during BMT.  She just couldn’t clot.  Thankfully after half an hour she finally stopped this morning.  Unfortunately Kimbell continues to be a puzzle and throw us curve balls.  We are looking to get an immunology consult b/c too many things are going wrong so maybe they can give us some insight!  Please say a prayer for her to get better soon.  It’s been a rough summer and really rough week.

Love K, John, Paige and Stitch

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