Home for the Holidays

Once again... I'm delinquent in keeping this updated...  Ever so sorry!  Allison had an upper endoscopy done while we were at Children's on November 2-4, in an attempt to remove the stent, but it was unsuccessful for several reasons.  Dr. Kramer, the only scope doctor who has had success with stent removal of this type, says so far his success rate has only been about 50%.  Allison is quite small yet so that presents a challenge, plus she has a fair amount of scar tissue in there from living with liver disease for several years, so this all made it difficult to maneuver the scope around in there.  He could see the stent with the X-ray, but just couldn't find it with the scope, so the plan for now is to WAIT and hope it passes on its own, or give her a couple years to grow and if it hasn't passed they will have a better chance at removing it.  In the meantime, Allison is back on Ursodiol to help the bile flow and labs have all improved drastically so it's working!  We are slowly but surely weaning her off of the Prednisone and hope to be able to knock it altogether this week.  She is to have labs drawn tomorrow and if all looks good, they will let her stop taking that one, as well as 2 other meds that she is on to combat the side effects of Pred.  She is excited about that!  Then they'll check labs again in a week just to make sure her liver is happy when it isn't on steroids, and then she gets a break from labs for...????  Maybe a month!!!  That is something to celebrate!

We are home for the holidays...and we are thankful!  It's kind of ironic how we can wish for social life and yet be tired of going at the same time!  Going to clinic, going to lab draws, going to the hospital for procedures, catching up on all the things we neglected over the last year - eye check-ups, dentist appointments - and we are tired and want to stay home, but we'd like to be with friends.  The frustrating thing is that every time we attend a social gathering, Alli gets sick!  So...we will be happy to stay home and hope to stay healthy!


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