Today was the services for my friend's daughter, Just heartbreaking all around. My heart just breaks for the family as they grieve the loss of their beautiful daughter. It is so surreal because I know Rick and I will be there and I try to picture it but just can't. It's not fair to have these babies and know that you WILL bury them way before their time. Yet it is the reality of our situation for all three of us and many more families.

I cannot tell you how much I appreciate my beautiful family and cherish everyday I have with them all.

We decided not to take Janessa with us as we thought it would be too difficult. Now I am kicking myself b/c I think it would have helped her to understand the process and see her friends as only the three of them knows how the other feels. I was also able to connect with some old missed friends. Much love to you guys.

On our family front, Mr. Avery has been really struggling with what I think is his feeds and GI pain. Over the last few weeks we have increased his j feeds from 10cc to 15cc per/hr. (this is a whopping 1/2 ounce an hr, barely nothing) and yet it is too hard on his gut. So frustrating b/c I want nothing more than to get him off TPN and yet the reality is that his body won't let it happen. I just keep thinking "how did we get here?" Just a yr. ago he was at 30cc per/hr and no TPN and now he is 6days of 14hr TPN one day of IV fluids and struggling at 15cc. It seems hopeless. Yet I refuse to do anything invasive on him to get him off TPN. His liver looks great and I guess we will have to take it one day at a time and pray for no line infections. The only acute problem is that he is so stressed with pain that he cries and gets all worked up that he becomes so junky then requires tons of suctioning and tires and then needs O2. A vicious cycle. I feel like he is back where he was 6 months ago pain wise (crying with tears running down his face :( So I don't know what to do, do I drop down 2cc and stay there for wks and start the process all over again or just stay at 10cc and let him be happy and just take whatever comes with that. Hmmmmm tough one huh!!!

With all this I am still grateful to be home as a family and hope Avery decides to bypass the 4wk mark & starts to break our hospital record. Would be real nice :) I am just nervous that I will have to spend Thanksgiving in the hospital. It has not happened yet and I would like to keep it that way. My prayer to all the families that have to spend the holidays in the hospital.