An Great 6 Month Post BMT Clinic Appointment

Last Friday, we went to London for Miya's six month post BMT clinic appointment. 

Let me begin by saying, a week before the appointment, the BMT office called me and said that when Miya was in having her Hickman line removed, Norovirus (the virus that can cause vomiting and diarrhea) was present in her stool and she couldn't come out of isolation until she had three consecutive negative stool samples.  Great.  Why wasn't this caught before now??  What took them a month to notify me?  Anyway, we were in a special isolation room at the hospital because Norovirus is extremely contagious and even though she tested positive for this virus a month prior, there was no proof she wasn't carrying it anymore and precautions were taken. 

Miya was evaluated by Occupational Therapy and was found to be doing age-appropriate things.  No further follow-up is required and she will not be referred to a local Occupational Therapist.

An ECHO was scheduled, but because of the Norovirus, Miya was not able to attend and this will be rescheduled. 

The BMT doctor who saw Miya was very pleased with her post-BMT convalescence and went as far as to say that she was the best post-BMT Hurler patient she had ever treated (she is not the only doctor to say this).  We were also advised by the occupational therapist that in her two years of working at the hospital,  Miya was the only patient she had worked with who spent less than 40-60 days in hospital for a bone marrow transplant. 

Two of Miya's medications were stopped, and another one may be stopped, depending on the results of her immunity blood work that was taken on Friday. Also, her NG tube can come out providing we can coax her to drink 700-800ml of fluid a day and we can get her to take her remaining medications orally. Taking the medications orally hasn't been a problem, and between water, milk, and juice, the fluid requirements have proven to be successful over the last two days. 

Now, I'm not bragging (well, maybe a little) and I don't want to press my luck and a whole bunch of bad things happen (but I'm as prepared for that as I can be) but I think all of this is promising.  Chris and I always knew Miya was a star!!