Still home, still steady...

This week, we had appointments with our Pediatrician, GI, Occupational Therapy and Physical Therapy to assess how Elizabeth is doing now that she's home. The good news is, she appears to be stable! She's getting some of her strength back, and with the help of her new orthodics and sassy new shoes (thank God for Target and cheap cute shoes!) she actually spent some good time on her feet.

 

At our GI appointment, we got the results of last week's intestinal biopsy. The mixed blessing is, there's no real diagnosis...just dilated lymphatics, which are probably a result of her portal hypertension. We're relieved that she doesn't have yet another illness, but this leaves us without a clear option for treating her diarrhea and seeming mal-absorption. So that will just have to be dealt with in baby steps over the next weeks and months.

We've started her on blood pressure medication and will see our GI again on Thursday and get labs drawn so we can see if she's retaining fluid, absorbing nutrition, keeping her anemia under control, absorbing potassium and finally, to determine if her liver is processing ammonia properly. (She's been out of the hospital for over a week, but remains extremely tired...possibly as a result of a build up of ammonia in her system from a liver that's not working perfectly)

In the middle of this, Elizabeth's caught a cold, and continues to have a serious diaper rash! We spent much of the afternoon moving a waterproof pad around on the floor so she could have some "air time". She still managed to pee on our floor and her bed. :) Thank goodness for hard-wood floors!

We're enjoying beautiful fall days here, and even made it out for a walk and some swing time at the park. She loved it. My muscle strain is vastly improved thanks to all the help we've been receiving. I'm at 35 weeks now. We're anticipating BGH2's arrival at the end of November and praying that God would protect Elizabeth from any more hospitalizations or complications before then.