Wow, it’s really been a while since I’ve sat down and written a detailed update.  This holiday season has come with so many bumps in the road that I haven’t even had a chance to write a blog post.

As most of you know we had to rush back up to Pittsburgh on Thanksgiving for a little over a week when Annabelle had pneumatosis and C. Diff. That trip was more stressful than her transplant due to the fact that we had nothing packed since the trip was unexpectedly two days after we just got home.

When we finally did get back home to NC Annabelle caught a tummy bug a few days later which caused us to spend about four days back in the local  hospital. 

Then after we’d been back home again for a week, my mom fell and was in the hospital for several days.  To say the past month has been crazy would be an understatement…it was downright overwhelming and exhausting!  We wouldn’t have even survived Christmas had it not been for 2-day shipping with Amazon Prime!

Things have finally calmed down a bit over the past two weeks. Mike and I have both been off work since December 22nd and that has finally allowed us to get our house back in working order.  I was also able to stock our freezer with lots and lots of frozen meals to get us through the winter; I really hope this will help eliminate stress and save us money.  I’ve also gotten into the routine of weighing Annabelle’s daily formula and drawing up all of her medications weekly…this has been a huge time saver on a daily basis!  I have to do whatever I can to make the weekdays easier while Mike and I go back to work and back to our rountined life.

Annabelle has really been able to thrive the past few weeks now that she’s home and out of the hospital.  It’s amazing the amount of energy and endurance she now has post-transplant!  Our sweet baby girl is now transitioning to a fiesty little toddler that wants to get her hands on everything!  Although her gross motor skills are heavily delayed, she’s gained so much more strength and is making huge strides.  She’s able to get into crawling position by herself, and she’s so close to just taking off any day now!  She has learned how to get where she wants by skooting on her butt (yes, it looks funny!).  We try to stop her from doing this when we can, but she’s making it a habit of quickly skooting as soon as we walk away.  Needless to say, the pack-n-play and her large play pen are definitely getting great use now to keep her contained while we cook or clean dishes.  Just this week she’s also showing interest in wanting to pull up, so Mike has finally had to lower her crib and take away her hanging mobile.  Although her increased mobility will definitely pull us out of our comfort zone in regards to germs, we can’t be more thrilled with the fact that she’s finally starting to act like a toddler and have the energy and strength she needs to gain skills.

Annabelle’s feeding skills have also gotten a little bit better.  She’s still primary tube fed, but now that her tummy issues have resolved we have been increasing her rate and have her fed in less than 25 minutes now.  We are also feeding her pureed foods and puffs a couple times a day.  It’s definitely helping now that we’re back home and can all eat together on a regular basis.  She has a high chair toy she really likes and she’s quickly learned that if she takes a bite of food she gets to spin the toy (hey, if it works for Pavlov’s dogs why can’t it work for Annabelle!). So now she’s actually finishing a whole container of Gerber food in 2-3 feedings!  She also really likes the little crunchers and she nibbles on mum-mum rice husks.  We’re really looking forward to getting started back with an occupational therapist who can help Annabelle continue her feeding skills.   We finally have big hopes that she will eat food exclusively by mouth eventually.

The only drawback to life right now is Annabelle’s bloodwork results.  Thanks to her tummy bug, her Prograf (main anti-rejection med) levels have been all over the place (they like her level to be between 8-10).  Food (or lack thereof) can really mess with how that medication absorbs.  When she was throwing up her level jumped up to a 15 which is not good at all since that’s too much immunosuppression.  So for several days we were told to hold her night dose to bring that level down. Well, when we had bloodwork done the following Tuesday her Prograf level dropped all the way to a 2 which is also not good because that wasn’t enough immunosuppression.  So we went back on our normal dose and last Tuesday her Prograf level was still only at a 5 (remember they want her between 8-10).  Well because of the high 15 level during her tummy bug her EBV had a field day and is back up to 28,000. AND because her Prograf dropped so low the past two weeks (level 2-5) her liver numbers have kept trending up (ALT is up to 97 and AST is up to 78) .  So last week Pittsburgh increased her Prograf a little bit more, but they did not want to increase her Prednisone (too much immunosuppression would really cause the EBV to go sky high!).   Sorry, I realize all these number being thrown out is probably very confusing!  Bottom line – her numbers are high…ugh.

So where do all these numbers leave us now?  Well, we’re going to repeat bloodwork on Tuesday.  If her liver numbers have not come back down with the past week’s increased Prograf then Pittsburgh will want Annabelle to have another liver biopsy to see if there’s rejection.  The good news is that the biopsy can be done at Brenner Children’s Hospital.  The bad news is that the biospy takes a whole day outpatient (maybe more if she has to go in the night before to get D-10 fluids since she can’t have food so many hours before the procedure).   Then if there is rejection then that might mean IV steriods a few days in the hospital (here, not Pittsburgh).  We will say that Pittsburgh has been amazing and we have the best post-transplant coordinator who makes sure Annabelle’s care is managed well!  We know we are in good hands no matter what Annabelle’s body is doing.

So we need some big prayers for some good labs on Tuesday!

Prayer Requests:

1.) Continued prayer for the donor’s family as they start 2018 without their loved one.

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

3.) Continued prayer that Annabelle would have an increased appetite, and that the feeding therapy would start soon.

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

5.) Continued prayer for quick blood draws, and that Annabelle would get more and more comfortable with each one that passes…Praise God we found a great phlembotimist here at home!

6.) Even though we mainly keep Annabelle at home, please pray that God would place a hedge of protection around her when we do have to take her out of the house.  Her body is still heavily immunosuppressed and we want to keep her out of the hospital this winter as much as possible!

7.) HUGE PRAYER THAT TUESDAY MORNING’S BLOODWORK RESULTS WOULD SHOW LOWER LIVER NUMBERS AND LOWER EBV SO THAT A BIOPSY WOULD NOT BE NEEDED.