Tue. 5/20 - update

Thank you God for giving us such a good night this evening. It's always nice to go to bed on a happy note! Things started out pretty good when Caed woke up this morning. He was ok for about the first hour or so....then the crying/vomiting began. Just like everyday, we have these moments scattered throughout the day. Sometimes they last longer than others. About mid-morning, my good friend Marilyn came out with her kids. Caed enjoyed being around them (even if most of it was just watching them play while he sat on the couch). It's good for him to be around other children. I think sometimes it takes his mind off his problems for awhile. Then, this evening, we went out to "The Everitt Pool" (thank you Lee J. and Sandy) and he sat and watched everyone swim. He did ok for about an hour and then he gave me the "sign" (hand on tummy) and I knew it was time for us to go. As soon as we left the backyard he began crying. He threw up when we got home and then sat on the couch for quite awhile. He just seemed so depressed. Finally, Reagan made it home and that's when we saw Caed truly be himself all day long. Grammy had bought them a new game for their Wii, and he wanted to play. He jumped up and was being so silly. Immediately a light in Reagan's eyes went off. When she sees the"real Caed" she gets so excited. I know she misses him (like we all do). They played Wii for awhile, made some silly videos on the web cam, went downstairs to play air hockey, etc... and just overall had a VERY good night. My parents went out this evening, so it was just us 5 here. I am so grateful for having this time. (especially since Caed was feeling well) It was good for all of us. We have needed it! We began today giving Caed 5cc. (tsp) of Carnation Instant Breakfast every hour. (that's basically what he would be getting with the feeding tube) There were times he threw it up, but overall...it was progress. We will try to continue this and also gradually increase it like they did in the hospital. IF he can successfully do this, the J-tube option will probably be done away with. We are wanting them to take out the G-tube. It will be a week tomorrow that it has been totally closed! Dr. Goldthorn can't believe it! I'm sure just having that in his stomach is irritating it. I talked with Dr. G more about the Pediatric Behaviorist today. She spoke very highly of this woman. We will probably set up a time for her to initially assess Caed next week. I am excited to start that and am praying for positive results. Dr. G also said Caed can most likely stop the antibiotics by the end of the week. I am really praising God for that one! These meds are continuous all day and night. I have been having to be the day AND the night nurse. Have only been getting about 4 hrs. of sleep the last few nights. Surprisingly I feel ok though. Maybe just knowing it will only last a few more days helps.

Todd will fly back to Celina in the morning. It is always good having him here. Not only for an extra set of hands, but I think having us both around is good for Caed (& Reagan). Next week when Todd flies out, Reagan will get to go with him. She has been wanting to go back for awhile now. It's always good for her to be back home if only for a few days.

Please specifically pray for the "nutrition drink" we are giving him to increase and also be able to STAY DOWN! (the TPN can also decrease the more his stomach starts working on its own) A huge need!! We also had a praise with some blood work done today. Thank you God for answering our prayer!


Caed and his friend Ben taking
care of the fish


Playing Wii

*Thank you Celina Bobcat football
team and coaches for everything you
sent Caed! He wore his shirt very
proud today!!!


Nurse Reagan


Caleb and his big blue eyes