Help me keep my sanity!!!!!!!!!

Refeedings are going very slow. The doctors will not allow us to take Lucas home until they reverse his surgery in December. We have scheduled a Care Conference with the hospital team that has been caring for him. This includes nurses, GI docs, Surgeon and Social worker. They will all decide what is best for Lucas. The choices will be to stay here, see if Utah Valley is confidant in his care, or a live in home care nurse. Lucas's condition is WAY too difficult and critical for me to manage, let alone 3 other active boys. It is almost impossible for me to balance the kids in school in Orem and traveling daily to SLC. I know this will be a long term stay and I need a break! The longest we have had Lukie home is 2 weeks out of 4 1/2 months he has been alive. Some GI docs feel like they will find a good treatment for Lucas. Some of them don't think they will find a treatment for him. We will be very lucky to have Lucas home for Christmas.

As we were about to leave this evening Lucas vomited a ton. He is not getting enough through his feedings to produce that much throw up. They do not know what caused it but it is not a good sign. His ostomy bag was also empty which may mean he has an obstruction. They are watching him VERY CAREFULLY. I know everyone is busy with their own lives, and I appreciate the support we have received. A few people have offered to take a turn watching Lucas at the hospital. (even 1 or 2 hours at any time would help, especially with Mike needing to go back to work) It is out of the way for a lot of you, but if you are still willing to do it we would truly appreciate it. It is so hard to leave him alone, as well as leaving the older boys. I wish I could be in 2 places at once!!!

I (Daddy) being honest this is really taking a toll on our family, it's just so hard to balance life. Mentally, physically, emotionally, financially its very hard. We continue to have faith in the lords plan for Lucas. I start to think that maybe I should pray for what God wants from me, not what I want from him. Lucas smile is so special. So many people (nurses, doctors, friends, family) have stated to us after seeing him in person, that he has a special spirit about him. We agree.

My sister Melissa had a slumber party with Lukie last night before returning home to Pittsburgh this morning. It was an exciting night with a lot of partying and little slumbering. Thanks Melissa for your help!! We miss you!!!!!!