Well folks, we’ve been here before…

Annabelle started having trace to small ketones this afternoon mixed with throwing up part of her 6pm feed.  As some of you know, she’s had some congestion for a few weeks now.  We took her to the pedatrician two weeks ago and everything checked out ok (no strep/no ear infection/clear chest).  The doctor told us that Annabelle likely had a little cold. So, we have been putting saline gel in her nose and suctioning mucus out as much as possible.  And for a few weeks she’s still acted fine and have had negative ketones each day. However, the past few days she has sounded more “raspy” in her troat and in the back of her nose.  We’re thinking she may be developing some sort of respiratory infection which would be triggering the elevated ketones.  The bad thing about her disorder is that her body cannot fight even a small illness without causing metabolic stress.  The good news is her body (ketones) usually lets us know something is going on even before the outside physical symptoms get bad.  Our hope is that we can get a doctor’s appointment early in the morning. 

Overnight, Annabelle will be on a modified sick day formula with pumping pedialyte and added sugar in between her feedings for extra calories.  Hopefully, this will help stabilize things overnight to buy us some time to make it to the doctor’s office in the morning.

Please pray for the following:

1.) Pray we can get an early appointment in the morning at the pediatrican’s office, and pray that they would be understanding of her condition (our usual pediatrician is so great and usually accomodates us by putting us in a private room that has not had any germ exposure that day).

2.) Pray that whatever is causing Annabelle’s ketones to rise would be treatable and resolve quickly. 

3.) Continue to pray for Annabelle to get well and stay well, as she cannot have the transplant unless she is in prime health.  Even if we get “the call” we cannot go up to Pittsburgh if Annabelle is sick (even something small like a cold).

4.) God would give us words to speak boldly about His faithfulness throughout this journey, as we feel we’ve been given the “microphone” with so many media outlets reaching out to help us tell our story.  In turn, we pray for God to supply reporters with a heart to share our story through the “Gospel Lens.”