Day 3 Pre-op

It has been a cold dreary day here in Cincinnati, and as I just looked out the window of our hotel there is a blanket of snow on the grass and trees.  Our appointments today seemed easy and quick.  Kendra saw Dr Rutter with ENT (we are return patients of his), he is planning on replacing the tubes in Kendras ears during her surgery in April.  He was pleased that her tonsils and abnoids werent bothering her and her snoring is at a minimum at this point but wants to continue watching them.  The home health team called me between appointments as our oximeter was blank!!!!  So we are doing the sleep study again tonight and he turned the alarms out of sleep mode so that I can moniter them.  We were happy to get to see Laurie Bailey and Lisa Berry in Genetics today as it had been a long time and they enjoyed playing with Kendra and felt her interaction with them was marvelous, not the shy clingly child they saw over a year ago.  Dr Leslie was impressed and glowed with Kendras achievements.  She was shocked to Kendras eating habits, and the way she did not feel threatened by her (she wanted to tell Audrey and Terry to keep up the great work) school has done wonders with her interaction with other children and security issues we had dealt with in the past!!! Way to go team......
Over all Kendra's labs were good.......her liver profile was alittle elevated but in the same range as it has been running and no worries there.  Transplant on the other hand has dropped again unfortunately.  September when we did our last level she was 41% and today the reading was 37.5%.  At this point we are waiting to see her urine GAG levels but as long as she is within the scale all will still be good.  As Stella says we will continue to watch with an eagle eye....Hurler's children (although we hope for) does not require 100%, it all depends upon the amount of enzyme that the donor cells produce and how well they function.  We did discuss-as they want me to keep an open mind the options for the future as far as enzyme replacement and a second transplant--but those would all be down the road decisions but things that we keep somewhere in our minds daily.  All of the what-ifs!!
Kendra met a new friend today while we were in the waiting room, a little girl who was just beautiful.  She was four years old and half of Kendras size.  There were alot of resemblances but she had a different syndrome that us.  They walked around holding hands for over an hour.  I so wished I had taken pictures for my own memories because they were beautiful. 
We have to be at radiology at 7:00am for her sedated ct scan, and then return her monitor to home health tomorrow.  I will try to update before we head home depending upon how well she is functioning after we get back to the hotel.