Thursday, October 26, 2017 - Minor Setbacks

Hello friends,

so much has transpired over this past week, and we've been busy with all of Annabelle's appointments and therapies.  We wanted to wait until all of our appointments were completed this week to give you all a proper update.

Unforunately, Annabelle's bloodwork Monday morning showed a very slight increase in all of her liver numbers, as well as, her EBV (it jumped from 11,000 copies to 18,000 copies).  Basically, the slight decrease in prednisone last week did nothing to control the EBV and it has flared worse this week.  The encouraging thing is that if the virus is "active" in her liver (I know this is all super confusing) then this could actually cause her liver numbers to go up as well (liver numbers tend to rise during an illness).  Luckily, the virus is not too rampant yet so Annabelle is showing no physical signs of this flare up.  The transplant's plan is to decrease her prednisone even more this week in hopes that the immune system can build up enough to fight off this virus.  Of course this means that boost in her immune system could cause her body to start rejecting the liver (let's pray that doesn't happen!).  Oh what a vicious cycle we're on, and I'm tired of reporting on the same problem every week without clear progress!   As usual, we'll repeat labs again on Monday.  The transplant Physican's Assistant did tell us this is a very common complication in months 3-4 post-transplant.  So this may keep us here longer than expected as there has been no mention of "home" in the past couple of weeks.

In feeding news, Annabelle's therapy is going well and she enjoys her time twice a week with our therapist.  She's really taken to puffs, and we feed her those when we're eating in the dining hall.   The baby food is hit or miss but some days she is able to eat 1oz of certain foods.  Her two front bottom teeth have broken through so our therapist said that can usual trigger a decline in eating.  So we're tyring not to stress too bad if Annabelle doesn't feel like eating much during this teething phase.  Luckily, she's not been too bad during the teething process (I guess with all she's been through the pain of cutting teeth is nothing!). 

Physically, Annabelle is gaining more and more strength. She's able to get into the crawling position (with assistance) and has been able to hold the position for several seconds at a time.  This week in PT she was also able to bear more weight in her feet into an assisted stand position.  She hates doing all of this work but we try to push her the best we can.

Today we had an appointment with a Cardiologist who has a special interest in PA patients.  Genetics recommended we see him for some slightly abnormal EKG and Echo results since Annabelle is at risk for Cardiomyopathy based on her PA diagnosis.  When she was in the hospital post transplant her Echo showed some thickening of the heart and her last EKG showed an elevated heart rate.  Luckily, her EKG from today came back completely normal because she was calm during the test (she screamed her head off for the last EKG which is no wonder why she had an increased heart rate). Her Echo today did still show some mild thickening of the left ventricle but her heart function is normal.  The good news is the Cardiologist said that they see this heart thickening very often in kids post-transplant (metabolic or not) who are exposed to long-term use of steriods.  Often these heart issues resolve gradually after steriods are removed.   Obviously based on her PA diagnosis we're going to do some follow-up Echos this next year to make sure she isn't developing Cardiomyopathy.  Right now the doctor isn't concerned since her heart is functioning normally and there is no need to do anything different.  We'll have our next Echo in 2-3 months either here (let's hope not!) or back home at Wake Forest or Duke.

So, that's our Annabelle update for the week!  We're hoping to get out a little bit tomorrow for Family Funday Friday since it's the nicest day of the week (brrr it's gotten cold here!).   Personally, I'm very lonely (I need some girl time) and we're both getting really really tired of Ronald McDonald House life.  Don't get me wrong: we LOVE what this place provides and life would be so much more difficult without their services.  It's just that every day feels like groundhog day, and the highlight of the week is seeing the new meal schedule posted (sad, but true).  Mike and I work great as a team taking care of Annabelle, but we easily get on each other's nerves living in this tiny apartment together 24/7.  If you have time please feel free to give us a call or send us a card; it would really make our day!

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 the transplant team could come up with a solution to get Annabelle off this rejection/EBV cycle.  We need to get home SOON and this is the only issue keeping us here!

4.) Continued prayer that Annabelle would have an increased appetite, and that the 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, and that Annabelle would get more and more comfortable with each one that passes.

7.) Pray that Annabelle's heart thickening is only the result of the steriods and not due to the start of Cardiomyopathy as a side effect of her disorder.

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Oh no! I hope these setbacks are overcome easily. In an article written by some 

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