Saturday, September 16, 2017 - Less Doctor Appointments!

This past week has been our most relaxing thus far and we've had much more time to spend together as a family.  Annabelle had bloodwork first thing Monday morning and had transplant clinic immediately afterwards.  The transplant team continues to be impressed with her progress and have now cut us back to bloodwork and clinic only once a week instead of twice a week!  Yay for less blooddraws!  The only bad news is that her bloodwork on Monday did show slightly elevated liver numbers (ALT jumped from 35 to 49 and AST jumped from 14 to 26).  Both numbers are still in the normal range but they had been trending downward.  However, last weekend we had decreased her Prograf (main anti-rejection drug) and decreased her predisone.  So the team decided to increase her Prograf level again (because her Prograf level was really low at a 6 when they want her between 10-12).  They had also hoped to decrease her predisone level but with the higher liver numbers we're just keeping her predisone the same right now.  Hopefully her bloodwork on Monday will show decreased liver numbers with the change of the increased Prograf.  We're in no way worried that this is rejection as her numbers didn't jump much, and we think it was just a problem with balancing her medications (it's really tricky those first few months to find the right balance which is why we have to stay so close for a month or two after discharge).

Annabelle also received physical therapy on Wednesday and even got to see one of the therapists who worked with her while she was in the hospital.  Annabelle doesn't really want to work very hard unless it's her idea so it's difficult to find motivation.  We're working hard to try to get her to side sit (which she HATES) and to bear weight through her feet (which she's getting better at).  We are happy to report that she does have more energy than before the transplant and can play for a couple hours at a time before losing energy.

In other news, the transplant team wanted her to have a swallow study done before she could eat solid foods again.  Unforunately, the earliest appointment the feeding team had available was September 26th!  So the transplant team has approved us to give Annabelle some thick baby food by mouth as long as she's tolerating them well without gagging, coughing, or vomitting. This afternoon we gave her solids for the first time since transplant.  We tried green beans and we can happily report that she still loves them!  She was able to eat half a container of green beans which she's never done in one sitting!  I'm not sure if it's the steriods making her hungry or if she just has more of an appetite due to the transplant.  Whatever the reason, we're so excited that she shows interest in food since that was an issue for her in the months leading up to transplant.  She also hasn't forgotten how to drink water out of her little red solo cup, and she even grabbed the cup with her own two hands today!  She's already making huge strides in such a short amount of time post-transplant and we are so thankful. 

Since we have a lot of downtime we keep ourselves busy in our apartment by working (I'm still working remotely 12.5 hours/week), reading, eating meals provided by great volunteers, and walking a few loops around the hospital each day (the weather is great right now!).  On days that there are no meals provided we try to venture out a little bit in the city.  Yesterday we went to the Duquesne Incline, out to eat at Franctuary (local hotdog joint), and walked around Lawrencville (little neighborhood where the hospital is located).  We look forward to venturing out more in the weeks ahead to explore all of Pittsburgh's little neighborhoods. Pittsburgh really is a bunch of tiny little neighborhoods that make up one big city.  And we've been impressed with all of the people here as they are hard-working, friendly folks with whom you can easily strike up a conversation.  We can see why so many people love it here so much, and we can honestly say that Pittsburgh is starting to feel a little like a home away from home. <3

Annabelle's 1st birthday is on Wednesday and our family will be coming up at the end of the month so we can all celebrate together.  Since the weather will be nice on her actual birthday, we decided the best place we can take her is the zoo since she loves animals so much and since it's an open area (we're hoping for less crowds on a weekday).  She's going to have a ball!

Until next time friends!  Thank you for all of you who pray!

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.) Pray that Annabelle's liver numbers would trend back down, and that her body would accept this liver as her own.

4.) Continued prayer that Annabelle's tummy would adjust well to all of her different medications (luckily she's not vomitted in over a week!).

5.) Continued prayer that Annabelle would have an increased appetite and do well with eating solid foods.

6.) Pray for Annabelle to continue to gain strength and make huge strides in her physical development.

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I am so concern about all the kids here about whom you always posted review in this website. This is making me happy that Annabelle responded well to the increased predisone and her liver numbers went back down.