Abby

It's been a busy couple of months, but some how, with the help of our wonderful GiGai (my mom) we have been able to keep up with Abby's many therapies and appointments.

Last Thursday we spent the entire morning at Children's Rehab and were able to see several of her specialists.  The dietician weighed and measured Abby then plotted her progress on the growth chart she's kept for the past 4 years.  To our dismay we found her to be falling off the curve.  

The past 3 years Abby has been growing slowly on her own personal curve, below the 3rd %ile.  As long as she steadily progressed no one worried about her small size.  Now she is quite a bit below even her own curve, and our dietician is concerned.  We talked about using a higher calorie formula, keeping her on the pump for more hours during each 24 hr period, and a few other ideas.

After also discussing Abby's symptoms of discomfort during feeds in addition to her continued stubborn fever we decided on a short-term course of action.  For 2 weeks we will try giving her smaller amounts of Miralax to help ease her tummy troubles.  We have also started her on a daily regimen of probiotics.  So far she seems to be somewhat better... but it's very difficult to know for sure what causes her hours of moaning/crying and finger biting.

The fevers continue to hit Abby just as we become hopeful that they have subsided.  Along with the fevers also come the dreaded seizures.  We have been giving Abby the clonazepam on the hard days when we fear the status (prolonged) seizures could strike.  So far so good.  It seems to help!

The whole fever dance has made us very weary.  Not knowing the cause but having to watch the effects it has on our girl can truly drive one to tears.

... and also to our knees