Monday

Sorry for the lack of updates, but there really hasn't been anything new to report. Kadyn has been very bloated and experiencing a lot of pain, mainly on her right side and around her cecostomy button. We started her home bowel regimen yesterday. This includes, 2 go-lytely cecostomy clean outs and 6-9 caps of Miralax orally each day. She had her x-ray this morning. It showed that the cecostomy is doing it's job as usual, but she is starting to hold stool on her right side above the cecostomy tube (this is why we were here in the first place). So, we decided to go to our max 9 caps of Miralax daily to see if it can move it along. She was in so much pain this morning she was in tears. We are so confused because she is hardly ever in pain at home (more of a discomfort when full rather than pain) and we cannot figure out where the pain is coming from. 
Kadyn needs at least one full day of minimal to no pain before we can come home. So, we just are hanging tight. Today, we are focusing on all the positives: liver enzymes are still coming down, no NG tubes, Kadyn is able to eat some food, no IVs right now, we are back down to 2 breathing/vest treatments a day, Gamma and Koy are here, I get to spend time with my babes without having to look at laundry or dirty dishes :) We would rather be home but we don't have that option yet, so we will take full advantage of the quality time we get to spend with each other.

Again, we thank you for the incredible amount of support you continue to show us! We are so blessed to have such an amazing krew of family and friends. We feel your prayers and have never felt alone on this journey...we have all of you to thank for that!

"I will hope continually, and will praise you more and more." Psalm 71:14

"We do not know what to do, but our eyes are on you." 2 Chronicles 20:12b