Wednesday, October 18, 2017 - Darn EBV

Hi friends!  Mike and I wanted to give a quick update on Annabelle's labs for this week.  Forunately, most of her liver numbers (AST, gGTP, and Bili) all continued to decrease with the exception of the ALT (it jumped from 58 to 64).  The doctors weren't overly concerned so they wanted to keep everything the same.  However, the EBV results came back yesterday and they were at 11,000 when last week was 4,500ish.  So, the EBV virus has reared it's ugly head yet again!  Since the EBV level more than doubled this week the transplant team had no choice but to decrease her prednisone again to calm the virus within her body.  So tonight we've decreased her prednisone from 2.5ml to 1.7ml per dose.  We'll repeat labs again on Monday and hope that her liver numbers don't start to rise (indicating rejection).  This is a very slow and tedious process - a careful balancing act of sorts.  On the bright side the transplant team feels like we only need to be seen physically in clinic bi-weekly (continuing with weekly bloodwork).  We took this as a very positive sign that we're at least moving in the right direction as far as getting back to NC. Since our next clinic appointment isn't until October 30th we know we're at least here until then. 

We're still chugging away at feeding therapy.  Feeding is still hit or miss, and she has some good days and some bad days. Today was a bad day where she didn't want to eat anything, but yesterday during "food exploration" time she actually picked up a baby mum-mum and took a couple bites!  So we take small victories when we see them!  For now all of her nutrition still comes through her g-tube, but we have flexibility to give her up to 1g of protein by mouth (we're lucky if we get 0.25g).  In big feeding news, we feel bumpy ridges on her bottom gums!  So our almost 13-month-old is finally starting to get a tooth!

Today in physical therapy Annabelle was ill as a hornet!  She woke up cranky and did not want to work today.  It could have been the prednisone, the teething, the lack of pooping overnight...likely all of the above. She pouted and cried during the whole session.  She's got the strength to get into crawling position but uses her strength to fight us instead of actually doing what we're tyring to get her to do.  She is one strong-willed little girl!

So, we continue our life here as usual at the Ronald McDonald House.  Luckily, the weather has cooled down and it's finally feeling like fall around here.  We've also met some nice families recently which has made our stay more enjoyable.  However, we'll be happy to get home as we really miss Daisy, friends/family, Lexington BBQ, Bojanges, and Granny's Donuts.

Love to you all!

Prayer Requests:

1.) Continued prayer for the donor's family.

2.) Continued prayer for no infections, no clotting, and no future episodes of rejection.

3.) Continued prayer that Annabelle's liver numbers and EBV would trend down.  Pray especially that her liver numbers would not spike with the decrease in the prednisone and pray that this EBV would go away!

4.) Continued prayer that Annabelle would have an increased appetite and that the increased feeding therapy would help her eat more food by mouth.

5.) Continued prayer for Annabelle to continue to gain strength and make huge strides in her physical development. 

6.) Continued prayer for quick blood draws!  This coming week we have to have her blood drawn in the afternoon instead of our usual morning time (due to another medication level they need to check).  Our last afternoon blood draw left Annabelle all worked up with puke all over the place.  Please pray for a good phlebotomist Monday afternoon!