Update

On May 30, Reilly saw Dr. Noel for a follow-up visit.  Her blood work was mostly good, her ammonia levels are still high - but at a safer level and being managed with the lactulose.  A few things are either high or low, but are explained by either her medications or effects of the surgery.  Baby girl grew a little over an inch in 6 weeks!  Sprouting up like a weed!  She has not gained enough weight though, less than half a pound.  Now we are working on putting weight on her frame through diet. 

Yesterday, we participated in the Children's Hospital Telethon and Reilly had a grand old time on set.  She was very excited to be a part of the event and also voted herself the cutest kid on the telethon!  Not a shy girl at all.  It was such a blessing to be a part of such a meaningful event.  Without Children's Hospital and Reilly's doctors there and Children's Memorial Hospital in Chicago, I'm not sure that she would be around to be able to participate.  For that reason alone, I will be forever indebted.  We are fortunate in so very many ways and it is nice to be able to do a small part in helping to give back. 

Reilly has a followup in Chicago at the end of June and then we see Dr. Noel again in July.  I am pretty sure we can handle one doctor visit per month.   Let's pray that things keep going the same way and there are no complications! 

So, Happy Summer, Happy Hurricane Season, and continued prayers of health and healing!  I'll keep you posted!

Oh, she will have her very first dance revue in 2 weeks - which should prove to be very interesting.  Anyone who knows me will understand that I'm not really a "dance mom" and this whole dance revue thing is definitely a trying experience for me.  Reilly, however, is a rock star and can apparently handle it all, with a smile!  I'm taking lessons, let's hope they pay off!