Channing is 4 weeks today!

Going back to our meeting with a NICU Doctors a few months ago.  The attending physician said, "at one point or another, you as parents will state, this journey is a roller coaster."  At the time we did not deny the truth of their statement, but they were right. We are locked in for the ride that Channing is building for us.  Since we have hopped on "Channing’s Life of Fighting ARPKD" roller coaster, we have definitely had some steep climbs, heart wrenching down slopes, as well as some gental twists and turns, we fight to stay in good spirits.
He has tolerated his bolus feeds through his NG tube very well, even as they increase the amount.  Along with this he has done very well with taking a bottle to learn how to bottle feed.  Though it isn’t much, 10 - 15 mL which is roughly a tablespoon.  It may not seem like much, however it is monumental while treating this disease, especially with peritoneal dialysis.  Imagine if you sat down and ate all of what you could for Thanksgiving dinner, including the gizzard and that delicious dessert your spouse made... oh yeah and that fruit cake that grandma brought over.  You would feel absolutely full, as if you could not eat or drink anything else.  I apologize for the hyperbole, but this is essentially how Channing feels around the clock from his peritoneal dialysis treatment.  So, for him to take a bottle and feel hungry is a great thing--he loves his fruit cake.
His peritoneal dialysis fluid has remained at th 2.5% dextrose concentration with a 30mL (1oz) dwell for 45 minutes.  However, this will change possibly next week as the fluid may be adjusted a bit which will test his tolerance.  Though he hates his blood pressure being taken, especially his right arm, his pressure has remained low.  Due to his low blood pressure, he has not needed any medication to regulate it.  He keeps on amazing us with his daily progress.  Additionally, today he received his 2nd of 3 weekly doses of epogen to stimulate red blood cell formation.
Going back to work has been rough as all I can think about is being with him and Vanessa while they are "hangin’ out" in his room together.  I do however find time to get up there a few times a day to make my Dad presence known. If I am able to see him before Vanessa arrives to the hospital, I read him a book, and at times listen to the Dr.’s discuss his care needs and achievements as they round.
A few great moments today as Channing celebrated 4 weeks!